:End-of-life care

{{Also|Analgesic}}

Advances in medicine in the last few decades have provided an increasing number of options to extend a person's life and highlighted the importance of ensuring that an individual's preferences and values for end-of-life care are honored.{{cite journal | vauthors = Waldrop DP, Meeker MA | title = Communication and advanced care planning in palliative and end-of-life care | journal = Nursing Outlook | volume = 60 | issue = 6 | pages = 365–369 | date = 2012-11-01 | pmid = 23141195 | doi = 10.1016/j.outlook.2012.08.012 | series = Special Issue: State of the Science: Palliative Care and End of Life }} Advanced care planning is the process by which a person of any age is able to provide their preferences and ensure that their future medical treatment aligns with their personal values and life goals.{{Cite journal |last1=Sudore |first1=Rebecca L. |last2=Lum |first2=Hillary D. |last3=You |first3=John J. |last4=Hanson |first4=Laura C. |last5=Meier |first5=Diane E. |last6=Pantilat |first6=Steven Z. |last7=Matlock |first7=Daniel D. |last8=Rietjens |first8=Judith A. C. |last9=Korfage |first9=Ida J. |last10=Ritchie |first10=Christine S. |last11=Kutner |first11=Jean S. |last12=Teno |first12=Joan M. |last13=Thomas |first13=Judy |last14=McMahan |first14=Ryan D. |last15=Heyland |first15=Daren K. |date=May 2017 |title=Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel |journal=Journal of Pain and Symptom Management |volume=53 |issue=5 |pages=821–832.e1 |doi=10.1016/j.jpainsymman.2016.12.331 |issn=1873-6513 |pmc=5728651 |pmid=28062339}}

It is typically a continual process, with ongoing discussions about a patient's current prognosis and conditions as well as conversations about medical dilemmas and options.{{Cite journal |last1=Sudore |first1=Rebecca L. |last2=Fried |first2=Terri R. |date=2010-08-17 |title=Redefining the "planning" in advance care planning: preparing for end-of-life decision making |journal=Annals of Internal Medicine |volume=153 |issue=4 |pages=256–261 |doi=10.7326/0003-4819-153-4-201008170-00008 |issn=1539-3704 |pmc=2935810 |pmid=20713793}} A person will typically have these conversations with their doctor and ultimately record their preferences in an advance healthcare directive.{{Cite web|title=Advance Care Planning: Health Care Directives|url=http://www.nia.nih.gov/health/advance-care-planning-health-care-directives|access-date=2021-09-13|website=National Institute on Aging|language=en}} An advance healthcare directive is a legal document that either documents a person's decisions about desired treatment or indicates who a person has entrusted to make their care decisions for them.{{Cite web|title=Advance Directives|url=https://www.cedars-sinai.org/programs/healthcare-ethics/advance-directives.html|access-date=2021-09-13|website=Cedars-Sinai|language=en-US}} The two main types of advanced directives are a living will and durable power of attorney for healthcare. A living will includes a person's decisions regarding their future care, a majority of which address resuscitation and life support but may also delve into a patient's preferences regarding hospitalization, pain control, and specific treatments that they may undergo in the future. The living will will typically take effect when a patient is terminally ill with low chances of recovery.{{Cite journal |last1=Silveira |first1=Maria J. |last2=Kim |first2=Scott Y. H. |last3=Langa |first3=Kenneth M. |date=2010-04-01 |title=Advance directives and outcomes of surrogate decision making before death |journal=The New England Journal of Medicine |volume=362 |issue=13 |pages=1211–1218 |doi=10.1056/NEJMsa0907901 |issn=1533-4406 |pmc=2880881 |pmid=20357283}} A durable power of attorney for healthcare allows a person to appoint another individual to make healthcare decisions for them under a specified set of circumstances. Combined directives, such as the "Five Wishes", that include components of both the living will and durable power of attorney for healthcare, are being increasingly utilized.{{Cite web |title=Aging with Dignity. Five Wishes |url=http://www.fivewishes.org/}}

Advanced care planning often includes preferences for CPR initiation, nutrition (tube feeding), as well as decisions about the use of machines to keep a person breathing, or support their heart or kidneys. Advanced care planning can be a complex and intimidating change for the patient. Often, when the patient must make a significant change, they will undergo the five stages of change. This theory includes: precontemplation, contemplation, preparation, action, and maintenance.{{Citation |last=Raihan |first=Nahrain |title=Stages of Change Theory |date=2025 |work=StatPearls |url=https://www.ncbi.nlm.nih.gov/books/NBK556005/ |access-date=2025-04-21 |place=Treasure Island (FL) |publisher=StatPearls Publishing |pmid=32310465 |last2=Cogburn |first2=Mark}} Many studies have reported benefits to patients who complete advanced care planning, specifically noting the improved patient and surrogate satisfaction with communication and decreased clinician distress. However, there is a notable lack of empirical data about what outcome improvements patients experience, as there are considerable discrepancies in what constitutes as advanced care planning and heterogeneity in the outcomes measured.{{Cite journal |last1=McMahan |first1=Ryan D. |last2=Tellez |first2=Ismael |last3=Sudore |first3=Rebecca L. |date=January 2021 |title=Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review |journal=Journal of the American Geriatrics Society |volume=69 |issue=1 |pages=234–244 |doi=10.1111/jgs.16801 |issn=1532-5415 |pmc=7856112 |pmid=32894787}} Advanced care planning remains an underutilized tool for patients. Researchers have published data to support the use of new relationship-based and supported decision making models that can increase the use and maximize the benefit of advanced care planning.{{cite journal | vauthors = Davidson G, Kelly B, Macdonald G, Rizzo M, Lombard L, Abogunrin O, Clift-Matthews V, Martin A | display-authors = 6 | title = Supported decision making: a review of the international literature | journal = International Journal of Law and Psychiatry | volume = 38 | pages = 61–67 | date = 2015-01-01 | pmid = 25676814 | doi = 10.1016/j.ijlp.2015.01.008 | s2cid = 26980470 | url = https://pureadmin.qub.ac.uk/ws/files/14365714/Supported_decision_making.pdf }}

End-of-life care conversations are part of the treatment planning process for terminally ill patients requiring palliative care involving a discussion of a patient's prognosis, specification of goals of care, and individualized treatment planning.{{cite journal | vauthors = Balaban RB | title = A physician's guide to talking about end-of-life care | journal = Journal of General Internal Medicine | volume = 15 | issue = 3 | pages = 195–200 | date = March 2000 | pmid = 10718901 | pmc = 1495357 | doi = 10.1046/j.1525-1497.2000.07228.x }} A recent Cochrane review (2022) set forth to review the effectiveness of interpersonal communication interventions during end-of-life care.{{Cite journal |last1=Ryan |first1=Rebecca E |last2=Connolly |first2=Michael |last3=Bradford |first3=Natalie K |last4=Henderson |first4=Simon |last5=Herbert |first5=Anthony |last6=Schonfeld |first6=Lina |last7=Young |first7=Jeanine |last8=Bothroyd |first8=Josephine I |last9=Henderson |first9=Amanda |date=2022-07-08 |editor-last=Cochrane Consumers and Communication Group |title=Interventions for interpersonal communication about end of life care between health practitioners and affected people |journal=Cochrane Database of Systematic Reviews |language=en |volume=2022 |issue=7 |pages=CD013116 |doi=10.1002/14651858.CD013116.pub2 |pmc=9266997 |pmid=35802350}} Research suggest that many patients prioritize proper symptom management, avoidance of suffering, and care that aligns with ethical and cultural standards.{{Cite journal |last1=Steinhauser |first1=K. E. |last2=Clipp |first2=E. C. |last3=McNeilly |first3=M. |last4=Christakis |first4=N. A. |last5=McIntyre |first5=L. M. |last6=Tulsky |first6=J. A. |date=2000-05-16 |title=In search of a good death: observations of patients, families, and providers |url=https://pubmed.ncbi.nlm.nih.gov/10819707 |journal=Annals of Internal Medicine |volume=132 |issue=10 |pages=825–832 |doi=10.7326/0003-4819-132-10-200005160-00011 |issn=0003-4819 |pmid=10819707|s2cid=14989020 }} Specific conversations can include discussions about cardiopulmonary resuscitation (ideally occurring before the active dying phase as to not force the conversation during a medical crisis/emergency), place of death, organ donation, and cultural/religious traditions.{{Cite journal |last1=Bailey |first1=F. Amos |last2=Allen |first2=Rebecca S. |last3=Williams |first3=Beverly R. |last4=Goode |first4=Patricia S. |last5=Granstaff |first5=Shanette |last6=Redden |first6=David T. |last7=Burgio |first7=Kathryn L. |date=July 2012 |title=Do-not-resuscitate orders in the last days of life |url=https://pubmed.ncbi.nlm.nih.gov/22536938 |journal=Journal of Palliative Medicine |volume=15 |issue=7 |pages=751–759 |doi=10.1089/jpm.2011.0321 |issn=1557-7740 |pmid=22536938}}{{Cite journal |last1=Gozalo |first1=Pedro |last2=Teno |first2=Joan M. |last3=Mitchell |first3=Susan L. |last4=Skinner |first4=Jon |last5=Bynum |first5=Julie |last6=Tyler |first6=Denise |last7=Mor |first7=Vincent |date=2011-09-29 |title=End-of-life transitions among nursing home residents with cognitive issues |journal=The New England Journal of Medicine |volume=365 |issue=13 |pages=1212–1221 |doi=10.1056/NEJMsa1100347 |issn=1533-4406 |pmc=3236369 |pmid=21991894}} As there are many factors involved in the end-of-life care decision-making process, the attitudes and perspectives of patients and families may vary. For example, family members may differ over whether life extension or life quality is the main goal of treatment. As it can be challenging for families in the grieving process to make timely decisions that respect the patient's wishes and values, having an established advanced care directive in place can prevent over-treatment, under-treatment, or further complications in treatment management.{{Cite news|url=https://www.washingtonpost.com/national/health-science/a-united-family-can-make-all-the-difference-when-someone-is-dying/2016/11/18/d1bdb206-9161-11e6-9c85-ac42097b8cc0_story.html|title=A united family can make all the difference when someone is dying| vauthors = Harrington S |date=18 November 2016|newspaper=Washington Post|access-date=2017-01-07}}Pre, Athena, D. and Barbara Cook Overton. Communicating About Health. Available from: VitalSource Bookshelf, (7th Edition). Oxford University Press Academic US, 2023. Pp.49.

The Shared Decision-Making Theory (SDM) is crucial to end-of-life care conversations between patients, families, and providers. The Shared Decision-Making Theory allows patients and providers to collaborate on their treatment plans and efforts to ensure the patient's voice is heard. This model fosters a collaborative conversation between healthcare providers and patients that focuses on the patient's goals and beliefs, with the provider's expertise and medical knowledge to formulate a co-developed care plan.{{Cite journal |last=Montori |first=Victor M. |last2=Ruissen |first2=Merel M. |last3=Hargraves |first3=Ian G. |last4=Brito |first4=Juan P. |last5=Kunneman |first5=Marleen |date=August 2023 |title=Shared decision-making as a method of care |url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10423463/ |journal=BMJ evidence-based medicine |volume=28 |issue=4 |pages=213–217 |doi=10.1136/bmjebm-2022-112068 |issn=2515-4478 |pmc=10423463 |pmid=36460328}} For instance, a terminally ill patient may prioritize quality of life and seek to formulate an effective plan with their trusted provider.

Patients and families may also struggle to grasp the inevitability of death, and the differing risks and effects of medical and non-medical interventions available for end-of-life care.{{cite journal | vauthors = Romo RD, Allison TA, Smith AK, Wallhagen MI | title = Sense of Control in End-of-Life Decision-Making | journal = Journal of the American Geriatrics Society | volume = 65 | issue = 3 | pages = e70–e75 | date = March 2017 | pmid = 28029695 | pmc = 5357173 | doi = 10.1111/jgs.14711 }} People might avoid discussing their end-of-life care, and often the timing and quality of these discussions can be poor. For example, the conversations regarding end-of-life care between chronic obstructive pulmonary disease (COPD) patients and clinicians often occur when a person with COPD has advanced stage disease and occur at a low frequency.{{Cite journal |last1=Tavares |first1=Nuno |last2=Jarrett |first2=Nikki |last3=Hunt |first3=Katherine |last4=Wilkinson |first4=Tom |date=2017-04-01 |title=Palliative and end-of-life care conversations in COPD: a systematic literature review |url=http://openres.ersjournals.com/content/3/2/00068-2016 |journal=ERJ Open Research |language=en |volume=3 |issue=2 |doi=10.1183/23120541.00068-2016 |issn=2312-0541 |pmid=28462236|pmc=5407435 }} To prevent interventions that are not in accordance with the patient's wishes, end-of-life care conversations and advanced care directives can allow for the care they desire, as well as help prevent confusion and strain for family members. Applying the SDM Theory aids in making sure patients and providers are on the same page about the patient's plans and goals to promote mutual respect and communication. It ensures that all parties involved have their needs and wishes met and respected.

In the case of critically ill babies, parents are able to participate more in decision making if they are presented with options to be discussed rather than recommendations by the doctor. Utilizing this style of communication also leads to less conflict with doctors and might help the parents cope better with the eventual outcomes.{{Cite journal |date=2021-03-09 |title=Parents are meaningfully involved in decisions on the care of their critically ill baby when they are given options not recommendations |url=https://evidence.nihr.ac.uk/alert/parents-meaningfully-involved-care-decisions-critically-ill-baby-when-given-options-not-recommendations/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/alert_45227|s2cid=242477064 }}{{Cite journal |last1=Marlow |first1=Neil |last2=Shaw |first2=Chloe |last3=Connabeer |first3=Kat |last4=Aladangady |first4=Narendra |last5=Gallagher |first5=Katie |last6=Drew |first6=Paul |date=17 September 2020 |title=End-of-life decisions in neonatal care: a conversation analytical study |url=https://fn.bmj.com/lookup/doi/10.1136/archdischild-2020-319544 |journal=Archives of Disease in Childhood - Fetal and Neonatal Edition |language=en |volume=106 |issue=2 |pages=184–188 |doi=10.1136/archdischild-2020-319544 |pmid=32943530 |s2cid=221788612 |issn=1359-2998}}

The National Cancer Institute in the United States advises that the presence of some of the following signs may indicate that death is approaching:{{Cite web|title=Physical Changes as You Near the End of Life|url=https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/physical-symptoms.html|website=www.cancer.org|language=en|access-date=2020-04-30}}{{cite web | work = NCI Factsheet | url = http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care | title = End-of-Life Care: Questions and Answers | date = 30 October 2002 }}

• Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism).
• Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linen or clothing (caused in part by changes in the patient's metabolism).
• Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).
• Changes in breathing (indicate neurologic compromise and impending death) and accumulation of upper airway secretions (resulting in crackling and gurgling breath sounds) {{Cite journal |last1=Ferris |first1=Frank D. |last2=von Gunten |first2=Charles F. |last3=Emanuel |first3=Linda L. |date=August 2003 |title=Competency in end-of-life care: last hours of life |url=https://pubmed.ncbi.nlm.nih.gov/14516502 |journal=Journal of Palliative Medicine |volume=6 |issue=4 |pages=605–613 |doi=10.1089/109662103768253713 |issn=1096-6218 |pmid=14516502}}
• Decreased need for food and fluids, and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly).
• Decreased oral intake and impaired swallowing (caused by general physical weakness and metabolic disturbances, including but not limited to hypercalcemia) {{Cite journal |last1=Kehl |first1=Karen A. |last2=Kowalkowski |first2=Jennifer A. |date=September 2013 |title=A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life |url=https://pubmed.ncbi.nlm.nih.gov/23236090 |journal=The American Journal of Hospice & Palliative Care |volume=30 |issue=6 |pages=601–616 |doi=10.1177/1049909112468222 |issn=1938-2715 |pmid=23236090|s2cid=19376302 }}
• Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
• Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
• Skin becoming cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
• Rattling or gurgling sounds while breathing, which may be loud (death rattle); breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
• Turning of the head toward a light source (caused by decreasing vision).
• Increased difficulty controlling pain (caused by progression of the disease).
• Involuntary movements (called myoclonus)
• Increased heart rate
• Hypertension followed by hypotension{{cite web| vauthors = Linda LE, Ferris FD, von Gunten C |title=The Last Hours of Living: Practical Advice for Clinicians |url=https://www.medscape.com/viewarticle/716463_2 |website=Medscape|access-date=17 November 2017 |archive-url= https://web.archive.org/web/20170128195129/https://www.medscape.com/viewarticle/716463_2 |archive-date=28 January 2017}}
• Loss of reflexes in the legs and arms

The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:This list is based on the principal heading prompts in the Liverpool Care Pathway standard documentation template. A more detailed discussion of common symptoms and potential mitigation options can be found in the U.S. National Cancer Institute's PDQ [http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/HealthProfessional/page3 Last Days of Life: Symptom management].

; PainCanadian Nurses Association. "Position Statement: Providing Care at The End of Life," 2008, p.3

:Typically controlled with opioids, like morphine, fentanyl, hydromorphone or, in the United Kingdom, diamorphine.{{Cite web | publisher = AGLSTERMS. AglsAgent | location = Adelaide |title=Pharmacological management of symptoms for adults in the last days of life |url=https://www.sahealth.sa.gov.au/wps/wcm/connect/Public+Content/SA+Health+Internet/Clinical+Resources/Clinical+Programs+and+Practice+Guidelines/Medicines+and+drugs/Pharmacological+management+of+symptoms+for+adults+in+the+last+days+of+life/Pharmacological+management+of+symptoms+for+adults+in+the+last+days+of+life |access-date=2022-06-13 |website=www.sahealth.sa.gov.au}}{{cite web|last1=NHS|title=Diamorphine (Diamorphine 5mg powder for solution for injection ampoules)|url=http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Palliative%20Care&medicine=Diamorphine|website=NHS|access-date=11 February 2015}}{{cite web | url = http://www.mcpcil.org.uk/liverpool-care-pathway/pdfs/LCP%20HOSPITAL%20VERSION%2011%20%28printable%20version%29.pdf | title = LCP Sample hospital template | archive-url = https://web.archive.org/web/20111008072445/http://www.mcpcil.org.uk/liverpool-care-pathway/pdfs/LCP%20HOSPITAL%20VERSION%2011%20(printable%20version).pdf | archive-date= 8 October 2011 | url-status = live | work = Marie Curie Palliative Care Institute | location = Liverpool | date = November 2005 }} High doses of opioids can cause respiratory depression, and this risk increases with concomitant use of alcohol and other sedatives.{{Cite web|url=https://www.who.int/substance_abuse/information-sheet/en/|title=WHO {{!}} Information sheet on opioid overdose|website=WHO|access-date=2019-10-23}} Careful use of opioids is important to improve the patient's quality of life while avoiding overdoses.

; Agitation

: Delirium, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using clonazepam or midazolam,antipsychotics such as haloperidol or levomepromazine may also be used instead of, or concomitantly with benzodiazepines.{{cite journal | vauthors = Vella-Brincat J, Macleod AD | title = Haloperidol in palliative care | journal = Palliative Medicine | volume = 18 | issue = 3 | pages = 195–201 | date = April 2004 | pmid = 15198132 | doi = 10.1191/0269216304pm881oa | s2cid = 924336 }} Symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.

; Respiratory tract secretions

: Saliva and other fluids can accumulate in the oropharynx and upper airways when patients become too weak to clear their throats, leading to a characteristic gurgling or rattle-like sound ("death rattle"). While apparently not painful for the patient, the association of this symptom with impending death can create fear and uncertainty for those at the bedside.{{cite web | url = http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/HealthProfessional/page3 | work = NCI PDQ | title = Last Days of Life: Symptom management | publisher = United States National Cancer Institute | date = 9 March 2009 }} The secretions may be controlled using drugs such as hyoscine butylbromide, glycopyrronium, or atropine. Rattle may not be controllable if caused by deeper fluid accumulation in the bronchi or the lungs, such as occurs with pneumonia or some tumours.

; Nausea and vomiting

: Typically controlled using haloperidol, metoclopramide, ondansetron, cyclizine; or other anti-emetics (sometimes levomepromazine is used as second-line to alleviate both agitation and of nausea and vomiting).

; Dyspnea (breathlessness)

: Patients become increasingly likely to experience breathlessness in the last days and weeks of their lives, which can be very distressing for both the patients themselves and their loved ones.{{Cite journal |last1=Currow |first1=David C. |last2=Agar |first2=Meera R. |last3=Phillips |first3=Jane L. |date=2020-03-20 |title=Role of Hospice Care at the End of Life for People With Cancer |url=https://ascopubs.org/doi/10.1200/JCO.18.02235 |journal=Journal of Clinical Oncology |volume=38 |issue=9 |pages=937–943 |doi=10.1200/JCO.18.02235 |pmid=32023154 |issn=0732-183X|hdl=10453/146421 |hdl-access=free }} This symptom is typically controlled with opioids, like morphine, fentanyl or, in the United Kingdom, diamorphine

Constipation

: Low food intake and opioid use can lead to constipation which can then result in agitation, pain, and delirium. Laxatives and stool softeners are used to prevent constipation. In patients with constipation, the dose of laxatives will be increased to relieve symptoms. Methylnaltrexone is approved to treat constipation due to opioid use.{{cite journal | vauthors = Albert RH | title = End-of-Life Care: Managing Common Symptoms | language = en-US | journal = American Family Physician | volume = 95 | issue = 6 | pages = 356–361 | date = March 2017 | pmid = 28318209 | url = https://www.aafp.org/pubs/afp/issues/2017/0315/p356.html }}

Other symptoms that may occur, and may be mitigated to some extent, include cough, fatigue, fever, and in some cases bleeding.

A subcutaneous injection is one preferred route of delivery of medications when it has become difficult for patients to swallow or to take pills orally, and if repeated medication is needed, a syringe driver (or infusion pump in the US) is often likely to be used, to deliver a steady low dose of medication. In some settings, such as the home or hospice, sublingual routes of administration may be used for most prescriptions and medications.{{Cite journal |last1=Bartz |first1=Lena |last2=Klein |first2=Carsten |last3=Seifert |first3=Andreas |last4=Herget |first4=Iris |last5=Ostgathe |first5=Christoph |last6=Stiel |first6=Stephanie |date=October 2014 |title=Subcutaneous administration of drugs in palliative care: results of a systematic observational study |journal=Journal of Pain and Symptom Management |volume=48 |issue=4 |pages=540–547 |doi=10.1016/j.jpainsymman.2013.10.018 |issn=1873-6513 |pmid=24766744|doi-access=free }}

Another means of medication delivery, available for use when the oral route is compromised, is a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route. The catheter was developed to make rectal access more practical and provide a way to deliver and retain liquid formulations in the distal rectum so that health practitioners can leverage the established benefits of rectal administration. Its small flexible silicone shaft allows the device to be placed safely and remain comfortably in the rectum for repeated administration of medications or liquids. The catheter has a small lumen, allowing for small flush volumes to get medication to the rectum. Small volumes of medications (under 15mL) improve comfort by not stimulating the defecation response of the rectum and can increase the overall absorption of a given dose by decreasing pooling of medication and migration of medication into more proximal areas of the rectum where absorption can be less effective.{{cite journal | vauthors = de Boer AG, Moolenaar F, de Leede LG, Breimer DD | title = Rectal drug administration: clinical pharmacokinetic considerations | journal = Clinical Pharmacokinetics | volume = 7 | issue = 4 | pages = 285–311 | year = 1982 | pmid = 6126289 | doi = 10.2165/00003088-198207040-00002 | s2cid = 41562861 }}{{cite journal |vauthors=Moolenaar F, Koning B, Huizinga T| year = 1979 | title = Biopharmaceutics of rectal administration of drugs in man. Absorption rate and bioavailability of phenobarbital and its sodium salt from rectal dosage forms | journal = International Journal of Pharmaceutics | volume = 4 | issue = 2| pages = 99–109 | doi=10.1016/0378-5173(79)90057-7}}

Integrated care pathways are an organizational tool used by healthcare professionals to clearly define the roles of each team-member and coordinate how and when care will be provided.{{cite journal | vauthors = Campbell H, Hotchkiss R, Bradshaw N, Porteous M | title = Integrated care pathways | journal = BMJ | volume = 316 | issue = 7125 | pages = 133–137 | date = January 1998 | pmid = 9462322 | pmc = 2665398 | doi = 10.1136/bmj.316.7125.133 }} These pathways are utilized to ensure best practices are being utilized for end-of-life care, such as evidence-based and accepted health care protocols, and to list the required features of care for a specific diagnosis or clinical problem. Many institutions have a predetermined pathway for end of life care, and clinicians should be aware of and make use of these plans when possible.{{Cite journal |last1=Kitchiner |first1=D. |last2=Davidson |first2=C. |last3=Bundred |first3=P. |date=February 1996 |title=Integrated care pathways: effective tools for continuous evaluation of clinical practice |url=https://pubmed.ncbi.nlm.nih.gov/9238576 |journal=Journal of Evaluation in Clinical Practice |volume=2 |issue=1 |pages=65–69 |doi=10.1111/j.1365-2753.1996.tb00028.x |issn=1356-1294 |pmid=9238576}}{{Cite journal |last1=Campbell |first1=H. |last2=Hotchkiss |first2=R. |last3=Bradshaw |first3=N. |last4=Porteous |first4=M. |date=1998-01-10 |title=Integrated care pathways |journal=BMJ (Clinical Research Ed.) |volume=316 |issue=7125 |pages=133–137 |doi=10.1136/bmj.316.7125.133 |issn=0959-8138 |pmc=2665398 |pmid=9462322}} Integrated care pathways should also focus on standardizing healthcare processes while tailoring individual patient needs. For example, integrated pathways can be complex and promote a major change within the patient's lifestyle. in this case, it is essential to create a pathway that will allow for an individual to maintain autonomy and their current lifestyle without having to make drastic changes. These factors can be evaluated from the Social Ecological Model. This model can be broken down into individual, interpersonal, organizational, community, and societal/ political factors. All of which can impact how an integrated pathway will be implemented. {{Cite web |title=UNICEF's Brief on The Social Ecological Model |url=https://knowledge.unicef.org/mental-health-and-psychosocial-support/resource/unicefs-brief-social-ecological-model |access-date=2025-04-21 |website=Mental Health and Psychosocial Support |language=en}}

In the United Kingdom, end-of-life care pathways are based on the Liverpool Care Pathway. Originally developed to provide evidence based care to dying cancer patients, this pathway has been adapted and used for a variety of chronic conditions at clinics in the UK and internationally.{{cite journal | vauthors = Phillips JL, Halcomb EJ, Davidson PM | title = End-of-life care pathways in acute and hospice care: an integrative review | language = English | journal = Journal of Pain and Symptom Management | volume = 41 | issue = 5 | pages = 940–955 | date = May 2011 | pmid = 21398083 | doi = 10.1016/j.jpainsymman.2010.07.020 | doi-access = free }} Despite its increasing popularity, the 2016 Cochrane Review, which only analyzed one trial, showed limited evidence in the form of high-quality randomized clinical trials to measure the effectiveness of end-of-life care pathways on clinical outcomes, physical outcomes, and emotional/psychological outcomes.{{Cite journal |last1=Chan |first1=Raymond J. |last2=Webster |first2=Joan |last3=Bowers |first3=Alison |date=2016-02-12 |title=End-of-life care pathways for improving outcomes in caring for the dying |journal=The Cochrane Database of Systematic Reviews |volume=2 |issue=11 |pages=CD008006 |doi=10.1002/14651858.CD008006.pub4 |issn=1469-493X |pmc=6483701 |pmid=26866512}}{{cite journal | vauthors = Chan RJ, Webster J, Bowers A | title = End-of-life care pathways for improving outcomes in caring for the dying | journal = The Cochrane Database of Systematic Reviews | volume = 2 | issue = 11 | pages = CD008006 | date = February 2016 | pmid = 26866512 | pmc = 6483701 | doi = 10.1002/14651858.CD008006.pub4 | collaboration = Cochrane Pain, Palliative and Supportive Care Group }}

The BEACON Project group developed an integrated care pathway entitled the Comfort Care Order Set, which delineates care for the last days of life in either a hospice or acute care inpatient setting. This order set was implemented and evaluated in a multisite system throughout six United States Veterans Affairs Medical Centers, and the study found increased orders for opioid medication post-pathway implementation, as well as more orders for antipsychotic medications, more patients undergoing palliative care consultations, more advance directives, and increased sublingual drug administration. The intervention did not, however, decrease the proportion of deaths that occurred in an ICU setting or the utilization of restraints around death.{{Cite journal |last1=Bailey |first1=F. Amos |last2=Williams |first2=Beverly R. |last3=Woodby |first3=Lesa L. |last4=Goode |first4=Patricia S. |last5=Redden |first5=David T. |last6=Houston |first6=Thomas K. |last7=Granstaff |first7=U. Shanette |last8=Johnson |first8=Theodore M. |last9=Pennypacker |first9=Leslye C. |last10=Haddock |first10=K. Sue |last11=Painter |first11=John M. |last12=Spencer |first12=Jessie M. |last13=Hartney |first13=Thomas |last14=Burgio |first14=Kathryn L. |date=June 2014 |title=Intervention to improve care at life's end in inpatient settings: the BEACON trial |journal=Journal of General Internal Medicine |volume=29 |issue=6 |pages=836–843 |doi=10.1007/s11606-013-2724-6 |issn=1525-1497 |pmc=4026508 |pmid=24449032}}

While not possible for every person needing care, surveys of the general public suggest most people would prefer to die at home.{{cite journal | vauthors = Higginson IJ, Sen-Gupta GJ | title = Place of care in advanced cancer: a qualitative systematic literature review of patient preferences | journal = Journal of Palliative Medicine | volume = 3 | issue = 3 | pages = 287–300 | date = 2000-09-01 | pmid = 15859670 | doi = 10.1089/jpm.2000.3.287 }} In the period from 2003 to 2017, the number of deaths at home in the United States increased from 23.8% to 30.7%, while the number of deaths in the hospital decreased from 39.7% to 29.8%.{{cite journal | vauthors = Cross SH, Warraich HJ | title = Changes in the Place of Death in the United States | journal = The New England Journal of Medicine | volume = 381 | issue = 24 | pages = 2369–2370 | date = December 2019 | pmid = 31826345 | doi = 10.1056/NEJMc1911892 | doi-access = free }} Home-based end-of-life care may be delivered in a number of ways, including by an extension of a primary care practice, by a palliative care practice, and by home care agencies such as Hospice.{{Cite web|title=What Are Palliative Care and Hospice Care?|url=http://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care|access-date=2021-09-10|website=National Institute on Aging|date=14 May 2021 |language=en}} High-certainty evidence indicates that implementation of home-based end-of-life care programs increases the number of adults who will die at home and slightly improves their satisfaction at a one-month follow-up.{{cite journal | vauthors = Shepperd S, Gonçalves-Bradley DC, Straus SE, Wee B | title = Hospital at home: home-based end-of-life care | journal = The Cochrane Database of Systematic Reviews | volume = 3 | issue = 7 | pages = CD009231 | date = March 2021 | pmid = 33721912 | pmc = 8092626 | doi = 10.1002/14651858.CD009231.pub3 }} There is low-certainty evidence that there may be very little or no difference in satisfaction of the person needing care for longer term (6 months). The number of people who are admitted to hospital during an end-of-life care program is not known. In addition, the impact of home-based end-of-life care on caregivers, healthcare staff, and health service costs is not clear, however, there is weak evidence to suggest that this intervention may reduce health care costs by a small amount.

Not all groups in society have good access to end-of-life care. A systematic review conducted in 2021 investigated the end of life care experiences of people with severe mental illness, including those with schizophrenia, bipolar disorder, and major depressive disorder. The research found that individuals with a severe mental illness were unlikely to receive the most appropriate end of life care. The review recommended that there needs to be close partnerships and communication between mental health and end of life care systems, and these teams need to find ways to support people to die where they choose. More training, support and supervision needs to be available for professionals working in end of life care; this could also decrease prejudice and stigma against individuals with severe mental illness at the end of life, notably in those who are homeless.{{Cite journal |date=2022-03-31 |title=End of life care conversations and access |url=https://evidence.nihr.ac.uk/collection/end-of-life-care-research-highlights-the-importance-of-conversations-and-need-for-equal-access/ |access-date=2022-05-31 |website=NIHR Evidence |language=en-GB |doi=10.3310/collection_49245|s2cid=247873633 }}{{cite journal | vauthors = Edwards D, Anstey S, Coffey M, Gill P, Mann M, Meudell A, Hannigan B | title = End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study) | journal = Palliative Medicine | volume = 35 | issue = 10 | pages = 1747–1760 | date = December 2021 | pmid = 34479457 | pmc = 8637363 | doi = 10.1177/02692163211037480 }} In addition, studies have shown that minority patients face several additional barriers to receiving quality end-of-life care. Minority patients are prevented from accessing care at an equitable rate for a variety of reasons including: individual discrimination from caregivers, cultural insensitivity, racial economic disparities, as well as medical mistrust.{{cite journal | vauthors = Krakauer EL, Crenner C, Fox K | title = Barriers to optimum end-of-life care for minority patients | journal = Journal of the American Geriatrics Society | volume = 50 | issue = 1 | pages = 182–190 | date = January 2002 | pmid = 12028266 | doi = 10.1046/j.1532-5415.2002.50027.x | s2cid = 8290965 }} Furthermore, these disparities can be understood through the Social Ecological Model. This model discusses how different factors, such as personal, environmental, political, and societal, influence a persons lifestyle. The model highlights how the different levels can intersect and influence a patient's ability to carry out their treatment plan. {{Cite journal |last=Stokols |first=D. |date=1996 |title=Translating social ecological theory into guidelines for community health promotion |url=https://pubmed.ncbi.nlm.nih.gov/10159709 |journal=American journal of health promotion: AJHP |volume=10 |issue=4 |pages=282–298 |doi=10.4278/0890-1171-10.4.282 |issn=0890-1171 |pmid=10159709}}

{{Also|Psychologist}}

Family members are often uncertain as to what they should be doing when a person is dying. Many gentle, familiar daily tasks, such as combing hair, putting lotion on delicate skin, and holding hands, are comforting and provide a meaningful method of communicating love to a dying person.{{Cite book|title=How we die now: Intimacy and the work of dying| vauthors = Erickson KA |date=2013-01-01|publisher=Temple University Press|isbn=9781439908242|pages=128–131|oclc=832280964}}

Family members may be suffering emotionally due to the impending death. Their own fear of death may affect their behavior. They may feel guilty about past events in their relationship with the dying person or feel that they have been neglectful. These common emotions can result in tension, fights between family members over decisions, worsened care, and sometimes (in what medical professionals call the "Daughter from California syndrome") a long-absent family member arrives while a patient is dying to demand inappropriately aggressive care.

Family involvement in end-of-life care can be both beneficial and detrimental to patients, depending on the shape that involvement takes. On the one hand, family involvement is associated with reduced patient distress when the goals of the patient and the family are convergent. Loved ones can engage the patient in discussions about their care preferences, aid communication with the medical team, and offer social, emotional, and financial support. However, family involvement can also be detrimental when the goals of the patient and family are divergent. Emotionally charged decision-making and differing opinions on medical decisions like terminal sedation, withdrawing of treatment, and transitioning to hospice can lead to arguments, conflict, and poor communication. End-of-life decisions can be explained by the Theory of Reasoned Action (TRA), which balances personal values and the opinions and beliefs of family members. In the context of end-of-life cancer care, some key themes regarding familial conflict at the end-of-life include patients and family members being on different pages regarding the illness prognosis, familial strife, cultural differences, and the general stress that accompanies caregiving.{{Cite journal |last1=Laryionava |first1=Katsiaryna |last2=Winkler |first2=Eva Caroline |date=2021-08-27 |title=Dealing with Family Conflicts in Decision-making in End-of-Life Care of Advanced Cancer Patients |url=https://link.springer.com/article/10.1007/s11912-021-01122-x |journal=Current Oncology Reports |language=en |volume=23 |issue=11 |pages=124 |doi=10.1007/s11912-021-01122-x |pmid=34448971 |issn=1534-6269}} In addition to these, family can be a major predictor of whether or not the person engages in the behavior, and all parties have a mutual understanding of the end-of-life care plan. {{Citation |last=LaCaille |first=Lara |title=Theory of Reasoned Action |date=2020 |work=Encyclopedia of Behavioral Medicine |pages=2231–2234 |editor-last=Gellman |editor-first=Marc D. |url=https://link.springer.com/referenceworkentry/10.1007/978-3-030-39903-0_1619 |access-date=2025-04-21 |place=Cham |publisher=Springer International Publishing |language=en |doi=10.1007/978-3-030-39903-0_1619 |isbn=978-3-030-39903-0}}

Research on patient and family preferences have elucidated some key findings. In intensive care units, good communication, coordination between different arms of the care team, and spiritual support were found to be important to both patients and their families.{{Cite journal |last1=Alyami |first1=Hanan M. |last2=Chan |first2=Raymond Javan |last3=New |first3=Karen |date=2019-09-01 |title=End-of-life care preferences for people with advanced cancer and their families in intensive care units: a systematic review |url=https://link.springer.com/article/10.1007/s00520-019-04844-8 |journal=Supportive Care in Cancer |language=en |volume=27 |issue=9 |pages=3233–3244 |doi=10.1007/s00520-019-04844-8 |pmid=31102056 |issn=1433-7339}} When patients receive subpar end-of-life care – like recurring emergency room visits, chemotherapy administered at the end-of-life, or failure to be admitted to hospice – the well-being of their loved ones can suffer. In cases where the patient did not receive appropriate end-of-life care, families and loved ones experienced more depression and regret than families and loved ones with patients who experienced appropriate end-of-life care.{{Cite journal |last1=Ham |first1=Laurien |last2=Slotman |first2=Ellis |last3=Burghout |first3=Carolien |last4=Raijmakers |first4=Natasja JH |last5=van de Poll-Franse |first5=Lonneke V. |last6=van Zuylen |first6=Lia |last7=Fransen |first7=Heidi P. |date=2023-11-30 |title=Potentially inappropriate end-of-life care and its association with relatives' well-being: a systematic review |url=https://link.springer.com/article/10.1007/s00520-023-08198-0 |journal=Supportive Care in Cancer |language=en |volume=31 |issue=12 |pages=731 |doi=10.1007/s00520-023-08198-0 |pmid=38055062 |issn=1433-7339}}

In research done into shared decision-making (SDM) in regards to cancer patients receiving palliative care, it has been found that most patients rely on the physician to initiate some form of SDM, leading to family and friends being involved in the decision making process along with the patient and physician. However, this can also result in lapses of judgment, as physicians in these studies have typically showed intent to preserve a patient's "hope". This brings up a whole different case on whether or not it is physician's jobs to promote "hope", but obviously it seems like most do try to. Patients rely on their physician as an expert opinion, but in palliative care circumstances, the physician may want to involve the patient and their family more, since any medical interventions may be ineffective at that point. However, this again proves to be a slippery slope, as some patients facing existential uncertainty do not want a large part in the decision making process, instead defaulting to the previously mentioned expert opinion of doctors. The study suggests that SDM in regards to palliative cancer care is a challenging and constantly evolving situation, with it mostly revolving around the relationship between the patient, the patient's family, and the physicians in charge. Facilitating and building up the relationship between these parties is the best way to encourage positive SDM in palliative care cancer patients.{{Cite journal |last=Rabben |first=Jannicke |last2=Vivat |first2=Bella |last3=Fossum |first3=Mariann |last4=Rohde |first4=Gudrun Elin |date=2024-04-01 |title=Shared decision-making in palliative cancer care: A systematic review and metasynthesis |url=https://journals.sagepub.com/doi/10.1177/02692163241238384 |journal=Palliative Medicine |language=EN |volume=38 |issue=4 |pages=406–422 |doi=10.1177/02692163241238384 |issn=0269-2163 |pmc=11025308 |pmid=38481012}}{{Cite journal |last=Spronk |first=Inge |last2=Meijers |first2=Maartje C. |last3=Heins |first3=Marianne J. |last4=Francke |first4=Anneke L. |last5=Elwyn |first5=Glyn |last6=van Lindert |first6=Anne |last7=van Dulmen |first7=Sandra |last8=van Vliet |first8=Liesbeth M. |date=2019 |title=Availability and effectiveness of decision aids for supporting shared decision making in patients with advanced colorectal and lung cancer: Results from a systematic review |url=https://onlinelibrary.wiley.com/doi/10.1111/ecc.13079 |journal=European Journal of Cancer Care |language=en |volume=28 |issue=3 |pages=e13079 |doi=10.1111/ecc.13079 |issn=1365-2354 |pmc=9286651 |pmid=31066142}}

Spirituality is thought to be of increased importance to an individual's wellbeing during a terminal illness or toward the end-of-life.{{cite journal | vauthors = Batstone E, Bailey C, Hallett N | title = Spiritual care provision to end-of-life patients: A systematic literature review | journal = Journal of Clinical Nursing | volume = 29 | issue = 19–20 | pages = 3609–3624 | date = October 2020 | pmid = 32645236 | doi = 10.1111/jocn.15411 | s2cid = 220473546 | doi-access = free }} For example, most cancer patients report some level of spirituality or religiosity, but nearly half report some degree of spiritual struggle at the end-of-life.{{Cite journal |last1=Greer |first1=Joseph A. |last2=Applebaum |first2=Allison J. |last3=Jacobsen |first3=Juliet C. |last4=Temel |first4=Jennifer S. |last5=Jackson |first5=Vicki A. |date=2020-03-20 |title=Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer |journal=Journal of Clinical Oncology |volume=38 |issue=9 |pages=915–925 |doi=10.1200/JCO.19.00013 |issn=0732-183X |pmc=7082158 |pmid=32023161}} Pastoral/spiritual care has a particular significance in end of life care, and is considered an essential part of palliative care by the WHO.{{Cite web|url=http://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf|title=National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care.|date=2015|website=Australian Commission on Safety and Quality in Healthcare|access-date=2016-03-22|archive-date=2019-03-27|archive-url=https://web.archive.org/web/20190327175049/https://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf|url-status=dead}} In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice.{{Cite web|title=Providing Care and Comfort at the End of Life|url=https://www.nia.nih.gov/health/providing-comfort-end-life|website=National Institute on Aging|language=en|access-date=2020-04-30}}{{cite journal | vauthors = Rumbold BD | title = Caring for the spirit: lessons from working with the dying | journal = The Medical Journal of Australia | volume = 179 | issue = S6 | pages = S11–S13 | date = September 2003 | pmid = 12964927 | doi = 10.5694/j.1326-5377.2003.tb05568.x | name-list-style = vanc | s2cid = 2910179 }}

Spiritual, cultural, and religious beliefs may influence or guide patient preferences regarding end-of-life care.{{cite journal | vauthors = Fang ML, Sixsmith J, Sinclair S, Horst G | title = A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review | journal = BMC Geriatrics | volume = 16 | pages = 107 | date = May 2016 | pmid = 27193395 | pmc = 4872365 | doi = 10.1186/s12877-016-0282-6 | doi-access = free }} Healthcare providers caring for patients at the end of life can engage family members and encourage conversations about spiritual practices to better address the different needs of diverse patient populations. Studies have shown that people who identify as religious also report higher levels of well-being. This leads to a higher level of self-efficacy and provides the person with the skills to make and execute decisions relating to end-of-life care. Evidence supports that people who practice religion tend to have a more positive outlook on life and can help patients deal with stress associated with growing older. {{Cite journal |last=Jackson |first=Brenda R. |last2=Bergeman |first2=C. S. |date=2011-05-01 |title=How Does Religiosity Enhance Well-Being? The Role of Perceived Control |url=https://pmc.ncbi.nlm.nih.gov/articles/PMC4029596/ |journal=Psychology of Religion and Spirituality |volume=3 |issue=2 |pages=149–161 |doi=10.1037/a0021597 |issn=1941-1022 |pmc=4029596 |pmid=24860640}} On the other hand religion has also been shown to be inversely correlated with depression and suicide. While religion provides some benefits to patients, there is some evidence of increased anxiety and other negative outcomes in some studies.{{cite journal | vauthors = Van Ness PH, Larson DB | title = Religion, senescence, and mental health: the end of life is not the end of hope | journal = The American Journal of Geriatric Psychiatry | volume = 10 | issue = 4 | pages = 386–397 | date = 2002-07-01 | pmid = 12095898 | doi = 10.1097/00019442-200207000-00005 | pmc = 4357420 }} Religiosity, for example, has been associated with poorer advanced care planning.{{Cite journal |last1=Carmo |first1=Bruna dos Santos |last2=Camargos |first2=Mayara Goulart de |last3=Neto |first3=Martins Fidelis dos Santos |last4=Paiva |first4=Bianca Sakamoto Ribeiro |last5=Lucchetti |first5=Giancarlo |last6=Paiva |first6=Carlos Eduardo |date=2023-05-01 |title=Relationship Between Religion/Spirituality and the Aggressiveness of Cancer Care: A Scoping Review |url=https://linkinghub.elsevier.com/retrieve/pii/S0885392423000490 |journal=Journal of Pain and Symptom Management |language=English |volume=65 |issue=5 |pages=e425–e437 |doi=10.1016/j.jpainsymman.2023.01.017 |issn=0885-3924 |pmid=36758908}} Additionally, while spirituality has been associated with less aggressive end-of-life care, religion has been associated with an increased desire for aggressive care in some patients. Despite these varied outcomes, spiritual and religious care remains an important aspect of care for patients. Studies have shown that barriers to providing adequate spiritual and religious care include a lack of cultural understanding, limited time, and a lack of formal training or experience.{{cite journal | vauthors = Edwards A, Pang N, Shiu V, Chan C | title = The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research | journal = Palliative Medicine | volume = 24 | issue = 8 | pages = 753–770 | date = December 2010 | pmid = 20659977 | doi = 10.1177/0269216310375860 | s2cid = 206487407 }}

There is nuance to the relationship between religiosity or spirituality and end-of-life care, because different trends emerge based on factors like religious denomination and geographical location. For example, Catholics are significantly less likely to have a do not resuscitate (DNR) order compared to non-Catholics. Compared to Christians, Buddhists and Taoists in Singapore are more likely to receive aggressive, life-prolonging care. At the same time, people belonging to a particular religious or ethnic group should not be treated as a monolith. Within these groups, beliefs and end-of-life care preferences can vary quite widely, highlighting the need for open-minded, adaptable, and culturally competent end-of-life care. In the Western world, many health care providers lack knowledge about culturally and spiritually informed end-of-life care and report discomfort when engaging in religious discussions with people whose beliefs differ from their own. This is one hypothesis as to why minorities access end-of-life care at lower rates than white people. At the same time, engagement with end-of-life care services can improve when clinicians are educated on culturally and spiritually diverse beliefs, which can foster better relationships and communication between health care providers, patients, and families. Currently, web-based educational programs that center stories, dialogue, and personal reflection are showing promise at improving cultural and spiritual competence amongst providers.{{Cite journal |last1=Fang |first1=Mei Lan |last2=Sixsmith |first2=Judith |last3=Sinclair |first3=Shane |last4=Horst |first4=Glen |date=2016-05-18 |title=A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review |journal=BMC Geriatrics |volume=16 |issue=1 |pages=107 |doi=10.1186/s12877-016-0282-6 |doi-access=free |issn=1471-2318 |pmc=4872365 |pmid=27193395}}

Many hospitals, nursing homes, and hospice centers have chaplains who provide spiritual support and grief counseling to patients and families of all religious and cultural backgrounds.{{Cite web |title=Hospital Chaplain - Explore Health Care Careers - Mayo Clinic College of Medicine & Science|url=https://college.mayo.edu/academics/explore-health-care-careers/careers-a-z/hospital-chaplain/|access-date=2021-09-20|website=Mayo Clinic College of Medicine and Science|language=en}}

The World Health Organization defines ageism as "the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) towards others or ourselves based on age."{{Cite web |title=Ageism |url=https://www.who.int/health-topics/ageism |access-date=2023-07-25 |website=www.who.int |language=en}} A systematic review in 2017 showed that negative attitudes amongst nurses towards older individuals were related to the characteristics of the older adults and their demands. This review also highlighted how nurses who had difficulty giving care to their older patients perceived them as "weak, disabled, inflexible, and lacking cognitive or mental ability".{{Cite journal |last1=Rush |first1=Kathy L. |last2=Hickey |first2=Stormee |last3=Epp |first3=Sheila |last4=Janke |first4=Robert |date=December 2017 |title=Nurses' attitudes towards older people care: An integrative review |url=https://pubmed.ncbi.nlm.nih.gov/28639384/ |journal=Journal of Clinical Nursing |volume=26 |issue=23–24 |pages=4105–4116 |doi=10.1111/jocn.13939 |issn=1365-2702 |pmid=28639384|s2cid=23459685 }} Another systematic review considering structural and individual-level effects of ageism found that ageism led to significantly worse health outcomes in 95.5% of the studies and 74.0% of the 1,159 ageism-health associations examined.{{Cite journal |last1=Chang |first1=E.-Shien |last2=Kannoth |first2=Sneha |last3=Levy |first3=Samantha |last4=Wang |first4=Shi-Yi |last5=Lee |first5=John E. |last6=Levy |first6=Becca R. |date=2020 |title=Global reach of ageism on older persons' health: A systematic review |journal=PLOS ONE |volume=15 |issue=1 |pages=e0220857 |doi=10.1371/journal.pone.0220857 |issn=1932-6203 |pmc=6961830 |pmid=31940338 |bibcode=2020PLoSO..1520857C |doi-access=free }} Studies have also shown that one's own perception of aging and internalized ageism negatively impacts their health. In the same systematic review, they included this factor as part of their research. It was concluded that 93.4% of their total 142 associations about self-perceptions of aging show significant associations between ageism and worse health.

End-of-life care is an interdisciplinary endeavor involving physicians, nurses, physical therapists, occupational therapists, pharmacists and social workers. Depending on the facility and level of care needed, the composition of the interprofessional team can vary.{{Cite web|title=What Are Palliative Care and Hospice Care?|url=http://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care|access-date=2021-09-19|website=National Institute on Aging|date=14 May 2021 |language=en}} Health professional attitudes about end-of-life care depend in part on the provider's role in the care team.

Physicians generally have favorable attitudes towards Advance Directives, which are a key facet of end-of-life care.{{cite journal | vauthors = Coleman AM | title = Physician attitudes toward advanced directives: a literature review of variables impacting on physicians attitude toward advance directives | journal = The American Journal of Hospice & Palliative Care | volume = 30 | issue = 7 | pages = 696–706 | date = November 2013 | pmid = 23125398 | doi = 10.1177/1049909112464544 | s2cid = 12019820 }} Medical doctors who have more experience and training in end-of-life care are more likely to cite comfort in having end-of-life-care discussions with patients.{{cite journal | vauthors = Schmit JM, Meyer LE, Duff JM, Dai Y, Zou F, Close JL | title = Perspectives on death and dying: a study of resident comfort with End-of-life care | journal = BMC Medical Education | volume = 16 | issue = 1 | pages = 297 | date = November 2016 | pmid = 27871287 | pmc = 5117582 | doi = 10.1186/s12909-016-0819-6 | doi-access = free }} Those physicians who have more exposure to end-of-life care also have a higher likelihood of involving nurses in their decision-making process.{{cite journal | vauthors = Forte DN, Vincent JL, Velasco IT, Park M | title = Association between education in EOL care and variability in EOL practice: a survey of ICU physicians | journal = Intensive Care Medicine | volume = 38 | issue = 3 | pages = 404–412 | date = March 2012 | pmid = 22222566 | doi = 10.1007/s00134-011-2400-4 | s2cid = 25651783 | doi-access = free }}

A systematic review assessing end-of-life conversations between heart failure patients and healthcare professionals evaluated physician attitudes and preferences towards end-of-life care conversations. The study found that physicians found difficulty initiating end-of-life conversations with their heart failure patients, due to physician apprehension over inducing anxiety in patients, the uncertainty in a patient's prognosis, and physicians awaiting patient cues to initiate end-of-life care conversations.{{cite journal | vauthors = Barclay S, Momen N, Case-Upton S, Kuhn I, Smith E | title = End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis | journal = The British Journal of General Practice | volume = 61 | issue = 582 | pages = e49–e62 | date = January 2011 | pmid = 21401993 | doi = 10.3399/bjgp11X549018 | pmc = 3020072 }}

Although physicians make official decisions about end-of-life care, nurses spend more time with patients and often know more about patient desires and concerns. In a Dutch national survey study of attitudes of nursing staff about involvement in medical end-of-life decisions, 64% of respondents thought patients preferred talking with nurses than physicians and 75% desired to be involved in end-of-life decision making.{{cite journal | vauthors = Albers G, Francke AL, de Veer AJ, Bilsen J, Onwuteaka-Philipsen BD | title = Attitudes of nursing staff towards involvement in medical end-of-life decisions: a national survey study | journal = Patient Education and Counseling | volume = 94 | issue = 1 | pages = 4–9 | date = January 2014 | pmid = 24268920 | doi = 10.1016/j.pec.2013.09.018 | url = https://www.nivel.nl/nl/publicaties/4637 }}

The ethics of end-of-life care revolve around dignity and respect for the patient by minimizing their suffering, enhancing their quality of life, and honoring any wishes or advance directives they may have put forth. In practice, however, these goals can be complicated by factors like patient competence, family influence, and the absence of advanced care planning. Decisions about CPR, intubation, tube feeding, terminal sedation, physician-assisted suicide, and the stopping of life-prolonging treatment can all present ethical dilemmas for doctors and caregivers as they try to strike a balance between prolonging a patient’s life and preventing unnecessary pain. Four universal ethical principles can guide healthcare providers as they navigate difficult end-of-life care decisions:{{Cite journal |last1=Akdeniz |first1=Melahat |last2=Yardımcı |first2=Bülent |last3=Kavukcu |first3=Ethem |date=January 2021 |title=Ethical considerations at the end-of-life care |journal=Sage Open Medicine |language=en |volume=9 |doi=10.1177/20503121211000918 |issn=2050-3121 |pmc=7958189 |pmid=33786182}}

• Autonomy: Respecting a person’s right to make their own decisions. Patients are typically the best decision makers in their own lives. In the context of end-of-life care, however, autonomy is closely intertwined with advance directives like designated healthcare proxies, living wills, and do not resuscitate orders. If a patient loses the ability to make sound decisions at the end of their life, then all healthcare decisions should be made in accordance with their advance directives. In the absence of an advance directive, the decision-making power is transferred to the family. If the family is unable or unwilling to make these decisions, the responsibility falls on the patient’s healthcare team.

• Beneficence: The ethical obligation to make decisions that are in the best interest of the patient. If no advance directive exists, both physicians and loved ones can be faced with the difficult task of determining what the patient would have wanted their end-of-life care to look like. If an individual is unable to make their own decisions at the end of their life, consultations between doctors and family members or healthcare proxies can help determine the best course of action. Emotions can run high when a loved one is dying, which can hinder the decision-making process for both doctors and family members.{{Cite journal |last=Lim |first=Richard B. L. |date=October 2016 |title=End-of-life care in patients with advanced lung cancer |journal=Therapeutic Advances in Respiratory Disease |language=en |volume=10 |issue=5 |pages=455–467 |doi=10.1177/1753465816660925 |issn=1753-4666 |pmc=5933619 |pmid=27585597}}

• Nonmaleficence: Doing no harm. When it comes to end-of-life care, nonmaleficence generally means that the harm or pain caused by a medical intervention should not outweigh its benefit. The principle of double effect states that an action with both good effects and negative side effects can be performed ethically, as long as the negative side effect is not the goal and is not out of proportion to the intended positive outcome.{{Cite journal |last1=Riches |first1=Jamie C. |last2=Voigt |first2=Louis P. |date=January 2021 |title=Palliative, Ethics, and End-of-Life Care Issues in the Cancer Patient |url=https://linkinghub.elsevier.com/retrieve/pii/S0749070420300580 |journal=Critical Care Clinics |language=en |volume=37 |issue=1 |pages=105–115 |doi=10.1016/j.ccc.2020.08.005|pmid=33190764 }} For example, interventions like CPR and mechanical ventilation can be life-prolonging and even life-saving under the right circumstances – but they can also be painful and futile at the end of life. It is up to the physician, in consultation with the family, to weigh the risks and benefits of treatment and avoid putting the patient through needless suffering.
• Justice: The distribution of medical resources should be fair, equitable, and impartial. In the context of end-of-life care, this often requires providers to be knowledgeable about biases toward traditionally underserved groups and advocate appropriately on their behalf. Medical resources are limited and end-of-life interventions, in particular, can require a substantial investment of time and money. It is the responsibility of doctors and clinicians to ensure that finite resources are not being used to the benefit of one group over another. For example, a 2012 meta-analysis found differences in care – especially around the decision to withdraw treatment – based on factors like age and gender. Patients from vulnerable populations like women and the elderly were more likely to be the recipients of non-treatment decisions.{{Cite journal |last1=Rietjens |first1=Judith A.C. |last2=Deschepper |first2=Reginald |last3=Pasman |first3=Roeline |last4=Deliens |first4=Luc |date=April 2012 |title=Medical end-of-life decisions: Does its use differ in vulnerable patient groups? A systematic review and meta-analysis |url=https://linkinghub.elsevier.com/retrieve/pii/S0277953612001049 |journal=Social Science & Medicine |language=en |volume=74 |issue=8 |pages=1282–1287 |doi=10.1016/j.socscimed.2011.12.046|pmid=22401644 }}

Confusion surrounding the difference between euthanasia and withdrawing or withholding treatment is a distinction that can be distressing for family members and doctors alike. For family members, the concern is often ethical and philosophical in nature: "If I stop life-prolonging care, am I killing my loved one?" For doctors, this concern can go one step further: "If I stop providing life-prolonging care, is that euthanasia?" In addition to the ethical implications, doctors can fear legal ramifications since physician assisted suicide must be a voluntary decision on the part of the patient and is only legal in specific places under specific circumstances. Not only can this conflict be unpleasant for doctors, it can also lead to poorer outcomes for patients. Thus, clear directives are needed to identify when it is acceptable to withdraw or withhold treatment at the end of life. One argument contends that there is no ethical distinction between stopping a life-prolonging medical intervention once it has begun, and refusing to start it all together. If the intervention is medically futile, contrary to the best interest of the patient, or unwanted by the patient (either in the moment or in an advance directive), then it is ethically acceptable to withdraw or withhold treatment.

In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving{{Cite web|title = General Social Survey - Caregiving and Care Receiving (GSS)|url = http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=4502|website = www23.statcan.gc.ca|access-date = 2015-05-11}} found that 13% of Canadians (3.7 million) aged 15 and older reported that at some point in their lives they had provided end-of-life or palliative care to a family member or friend. For those in their 50s and 60s, the percentage was higher, with about 20% reporting having provided palliative care to a family member or friend. Women were also more likely to have provided palliative care over their lifetimes, with 16% of women reporting having done so, compared with 10% of men. These caregivers helped terminally ill family members or friends with personal or medical care, food preparation, managing finances or providing transportation to and from medical appointments.{{Cite web|url = http://www.statcan.gc.ca/pub/89-652-x/89-652-x2014004-eng.htm|title = Statistics Canada - End of life care, 2012|date = July 9, 2013|access-date = May 11, 2015}}

End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable," and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice,{{cite web | url = http://www.endoflifecare.nhs.uk/eolc/ | title = NHS National End of Life Care Programme | work = UK National Health Service | archive-url = http://webarchive.nationalarchives.gov.uk/20100304163252/http%3A//www.endoflifecare.nhs.uk/eolc/ | archive-date = 4 March 2010 }} and a national strategy document published in 2008.{{cite web | url = http://www.endoflifecare.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf | title = End of Life Care Strategy: Promoting high quality care for all adults at the end of life | work = UK National Health Service | archive-url= https://web.archive.org/web/20100202214014/http://www.endoflifecare.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf | archive-date= 2 February 2010 | date = July 2008 }}{{cite web | url = http://news.bbc.co.uk/1/hi/health/7748834.stm | title = Q&A: End of life care | work = BBC News | date = 26 November 2008 }} The Scottish Government has also published a national strategy.{{cite web | url = http://news.bbc.co.uk/1/hi/scotland/7572815.stm | title = 'Better' end of life care pledge | work = BBC News | date = 21 August 2008 }}{{cite web | url = http://www.scotland.gov.uk/Publications/2008/10/01091608/0 | title = Living and Dying Well: A national action plan for palliative and end of life care in Scotland | publisher = Scottish Government | date = 2 October 2008 }}{{cite web | url = https://www.nursingtimes.net/archive/scots-end-of-life-plan-launched-as-part-of-innovative-palliative-care-strategy-14-10-2008/ | title = Scots end-of-life plan launched as part of innovative palliative care strategy | work = Nursing Times | date = 14 October 2008 }}

In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illness{{cite web | url = https://publications.parliament.uk/pa/cm200809/cmselect/cmpubacc/99/9905.htm | title = End of life care: 1. The current place and quality of end of life care | publisher = House of Commons | work = Public Accounts Committee | date = 30 March 2009 | pages = paragraphs 1–3 }}{{cite web | url = http://www.endoflifecare.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf | title = End of life care strategy | archive-url = https://web.archive.org/web/20100202214014/http://www.endoflifecare.nhs.uk/eolc/files/DH-EoLC_Strategy_promoting_high_quality_Jul2008.pdf | archive-date = 2 February 2010 | publisher = UK Department of Health | date = July 2008 | pages = paragraphs 1.1 and 1.7-1.14 (pages 26-27) }}{{cite web | url = http://www.nao.org.uk/publications/0708/end_of_life_care.aspx | title = End of Life care | work = UK National Audit Office Comptroller and Auditor General's report | date = 26 November 2008 | pages = paragraphs 2.2-2.5 (page 15) }} – for example heart disease, cancer, stroke, or dementia. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However, a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs that required them to be there.{{cite web | url = http://www.nao.org.uk/publications/0708/end_of_life_care.aspx | title = End of Life care | work = UK National Audit Office Comptroller and Auditor General's report | date = 26 November 2008 | pages = paragraph 21 (page 7) }}

In 2015 and 2010, the UK ranked highest globally in a study of end-of-life care. The 2015 study said "Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue." The studies were carried out by the Economist Intelligence Unit and commissioned by the Lien Foundation, a Singaporean philanthropic organisation.{{cite news|title=Quality of Death Index 2015: Ranking palliative care across the world|url=http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015|access-date=8 October 2015|work=The Economist Intelligence Unit|date=6 October 2015|postscript=none|archive-date=9 October 2015|archive-url=https://web.archive.org/web/20151009031039/http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015|url-status=dead}}; {{cite news|title=UK end-of-life care 'best in world'|url=https://www.bbc.co.uk/news/health-34415362|access-date=8 October 2015|work=BBC|date=6 October 2015}}{{cite web | url = http://www.eiu.com/site_info.asp?info_name=qualityofdeath_lienfoundation&page=noads&rf=0 | title = The Quality of Death: Ranking end-of-life care across the world | work = Economist Intelligence Unit | date = July 2010 }}{{cite web | url = http://www.lifebeforedeath.com/qualityofdeath/highlights.shtml | title = Quality of death | archive-url = https://web.archive.org/web/20100718064803/http://www.lifebeforedeath.com/qualityofdeath/highlights.shtml | archive-date=2010-07-18 | work = Lien Foundation | date = July 2010 }}{{cite press release | url = http://www.prnewswire.com/news-releases/united-states-tied-for-9th-place-in-economist-intelligence-units-first-ever-global-quality-of-death-index-98412929.html | title = United States Tied for 9th Place in Economist Intelligence Unit's First Ever Global 'Quality of Death' Index | work = Lien Foundation press release }}{{cite web | url = https://www.bbc.co.uk/news/health-10634371 | title = UK comes top on end of life care - report | work = BBC News | date = 15 July 2010 }}

The 2015 National Institute for Health and Care Excellence guidelines introduced religion and spirituality among the factors which physicians shall take into account for assessing palliative care needs. In 2016, the UK Minister of Health signed a document which declared people "should have access to personalised care which focuses on the preferences, beliefs and spiritual needs of the individual." As of 2017, more than 47% of the 500,000 deaths in the UK occurred in hospitals.{{cite journal | vauthors = Choudry M, Latif A, Warburton KG | title = An overview of the spiritual importances of end-of-life care among the five major faiths of the United Kingdom | language = English | journal = Clinical Medicine | volume = 18 | issue = 1 | pages = 23–31 | date = February 2018 | pmid = 29436435 | pmc = 6330909 | doi = 10.7861/clinmedicine.18-1-23 | url = https://www.rcpjournals.org/content/clinmedicine/18/1/23 | access-date = March 19, 2021 | url-status = live | oclc = 7315481334 | archive-date = July 25, 2020 | archive-url = https://archive.today/20200725112349/https://www.rcpjournals.org/content/clinmedicine/18/1/23 }}

In 2021 the National Palliative and End of Life Care Partnership published their six ambitions for 2021–26. These include fair access to end of life care for everyone regardless of who they are, where they live or their circumstances, and the need to maximise comfort and wellbeing. Informed and timely conversations are also highlighted.{{Cite web |date=May 2021 |title=Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026 |url=https://www.england.nhs.uk/wp-content/uploads/2022/02/ambitions-for-palliative-and-end-of-life-care-2nd-edition.pdf |access-date=20 April 2022 |website=National Palliative and End of Life Care Partnership}}

Research funded by the UK's National Institute for Health and Care Research (NIHR) has addressed these areas of need.{{Cite journal |date=2022-03-31 |title=End of life care: research highlights the importance of conversations and need for equal access |url=https://evidence.nihr.ac.uk/collection/end-of-life-care-research-highlights-the-importance-of-conversations-and-need-for-equal-access/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/collection_49245 |s2cid=247873633}} Examples highlight inequalities faced by several groups and offers recommendations. These include the need for close partnership between services caring for people with severe mental illness,{{Cite journal |date=2022-02-28 |title=Team work and proactive healthcare could help people with severe mental illness receive good end-of-life care |url=https://evidence.nihr.ac.uk/alert/how-to-improve-end-of-life-care-for-people-with-severe-mental-illness/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/alert_49015 |s2cid=247180312}}{{cite journal |vauthors=Edwards D, Anstey S, Coffey M, Gill P, Mann M, Meudell A, Hannigan B |date=December 2021 |title=End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study) |journal=Palliative Medicine |volume=35 |issue=10 |pages=1747–1760 |doi=10.1177/02692163211037480 |pmc=8637363 |pmid=34479457}} improved understanding of barriers faced by Gypsy, Traveller and Roma communities,{{Cite journal |date=2021-12-17 |title=A highly personalised approach to end of life care is needed to help Gypsy, Traveller and Roma communities |url=https://evidence.nihr.ac.uk/alert/personalised-end-of-life-care-essential-travelling-communities/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/alert_48747 |s2cid=245290694}}{{cite journal |vauthors=Dixon KC, Ferris R, Kuhn I, Spathis A, Barclay S |date=February 2021 |title=Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis |journal=BMJ Supportive & Palliative Care |volume=14 |pages=bmjspcare–2020–002676 |doi=10.1136/bmjspcare-2020-002676 |pmid=33619223 |s2cid=231992307}} the provision of flexible palliative care services for children from ethnic minorities or deprived areas.{{cite journal |vauthors=Hardelid P, Dattani N, Gilbert R |date=August 2014 |title=Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: a data linkage cohort study |journal=BMJ Open |volume=4 |issue=8 |pages=e005331 |doi=10.1136/bmjopen-2014-005331 |pmc=4127921 |pmid=25085264}}; {{lay source|template=cite web|title=Most children with life-limiting conditions still die in hospital, not home or hospice|url=https://evidence.nihr.ac.uk/alert/most-children-life-limiting-conditions-die-in-hospital-not-home-hospice/|date=2021-07-20|language=en|doi=10.3310/alert_46991|s2cid=242843746}}{{cite journal |vauthors=Gibson-Smith D, Jarvis SW, Fraser LK |date=December 2020 |title=Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study |journal=Archives of Disease in Childhood |volume=106 |issue=8 |pages=780–785 |doi=10.1136/archdischild-2020-319700 |pmc=8311108 |pmid=33355156}}

Other research suggests that giving nurses and pharmacists easier access to electronic patient records about prescribing could help people manage their symptoms at home.{{Cite journal |date=2021-06-15 |title=Nurses and pharmacists are key to improving access to end of life medicines for people being cared for at home |url=https://evidence.nihr.ac.uk/alert/nurses-pharmacists-improve-access-end-of-life-medicines/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/alert_46494 |s2cid=241904445}}{{cite journal |display-authors=6 |vauthors=Latter S, Campling N, Birtwistle J, Richardson A, Bennett MI, Ewings S, Meads D, Santer M |date=September 2020 |title=Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors |journal=BMC Palliative Care |volume=19 |issue=1 |pages=148 |doi=10.1186/s12904-020-00649-3 |pmc=7517636 |pmid=32972414 |doi-access=free }} A named professional to support and guide patients and carers through the healthcare system could also improve the experience of care at home at the end of life.{{Cite journal |date=2020-09-16 |title=Terminally ill patients and their families may need more help to manage their medicines |url=https://evidence.nihr.ac.uk/alert/terminally-ill-patients-and-their-families-may-need-more-help-to-manage-their-medicines/ |journal=NIHR Evidence |type=Plain English summary |language=en |publisher=National Institute for Health and Care Research |doi=10.3310/alert_41179 |s2cid=242429298}}{{cite journal |vauthors=Wilson E, Caswell G, Latif A, Anderson C, Faull C, Pollock K |date=May 2020 |title=An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study |journal=BMC Palliative Care |volume=19 |issue=1 |pages=66 |doi=10.1186/s12904-020-0537-z |pmc=7216477 |pmid=32393231 |doi-access=free }} A synthesised review looking at palliative care in the UK created a resource showing which services were available and grouped them according to their intended purpose and benefit to the patient. They also stated that currently in the UK palliative services are only available to patients with a timeline to death, usually 12 months or less. They found these timelines to often be inaccurate and created barriers to patients accessing appropriate services. They call for a more holistic approach to end of life care which is not restricted by arbitrary timelines.{{Cite journal |date=2022-04-26 |title=End of life care should not wait for prediction of death |url=https://evidence.nihr.ac.uk/alert/end-of-life-care-should-not-wait-for-prediction-of-death/ |journal=NIHR Evidence |type=Plain English summary |language=en-GB |publisher=National Institute for Health and Care Research |doi=10.3310/post_50369 |access-date=2022-07-04 |s2cid=249936671}}{{cite journal |vauthors=Petrova M, Wong G, Kuhn I, Wellwood I, Barclay S |date=December 2021 |title=Timely community palliative and end-of-life care: a realist synthesis |journal=BMJ Supportive & Palliative Care |volume=14 |issue=e3 |pages=bmjspcare–2021–003066 |doi=10.1136/bmjspcare-2021-003066 |pmid=34887313 |s2cid=245013480|doi-access=free |pmc=11671952 }}

{{further|Hospice care in the United States}}

As of 2019, physician-assisted dying is legal in eight states (California, Colorado, Hawaii, Maine, New Jersey, Oregon, Vermont, Washington) and Washington D.C.{{cite web |title=Death with Dignity Acts - States That Allow Assisted Death |url=https://www.deathwithdignity.org/learn/death-with-dignity-acts/ |website=Death With Dignity}}

Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.

When considering only those aged 65 and older, estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) in 2006 goes to care for patients in their final year of life.{{cite web | vauthors = Appleby J | url = https://www.usatoday.com/money/industries/health/2006-10-18-end-of-life-costs_x.htm | title = Debate surrounds end-of-life health care costs | work = USA Today | date = 10 July 2011 }}{{cite journal | vauthors = Hoover DR, Crystal S, Kumar R, Sambamoorthi U, Cantor JC | title = Medical expenditures during the last year of life: findings from the 1992-1996 Medicare current beneficiary survey | journal = Health Services Research | volume = 37 | issue = 6 | pages = 1625–1642 | date = December 2002 | pmid = 12546289 | pmc = 1464043 | doi = 10.1111/1475-6773.01113 }} For the over-65s, between 1992 and 1996, spending on those in their last year of life represented 22% of all medical spending, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor.{{cite journal | vauthors = Hoover DR, Crystal S, Kumar R, Sambamoorthi U, Cantor JC | title = Medical expenditures during the last year of life: findings from the 1992-1996 Medicare current beneficiary survey | journal = Health Services Research | volume = 37 | issue = 6 | pages = 1625–1642 | date = December 2002 | pmid = 12546289 | pmc = 1464043 | doi = 10.1111/1475-6773.01113 | quote = Last-year-of-life expenses constituted 22 percent of all medical, 26 percent of Medicare, 18 percent of all non-Medicare expenditures, and 25 percent of Medicaid expenditures. }} These percentages appears to be falling over time, as in 2008, 16.8% of all medical spending on the over 65s went on those in their last year of life.{{cite journal | vauthors = De Nardi M, French E, Jones JB, McCauley J | title = Medical Spending of the US Elderly | journal = Fiscal Studies | volume = 37 | issue = 3–4 | pages = 717–747 | year = 2016 | pmid = 31404348 | pmc = 6680320 | doi = 10.1111/j.1475-5890.2016.12106 }}

Predicting death is difficult, which has affected estimates of spending in the last year of life; when controlling for spending on patients who were predicted as likely to die, Medicare spending was estimated at 5% of the total.{{cite journal | vauthors = Einav L, Finkelstein A, Mullainathan S, Obermeyer Z | title = Predictive modeling of U.S. health care spending in late life | journal = Science | volume = 360 | issue = 6396 | pages = 1462–1465 | date = June 2018 | pmid = 29954980 | pmc = 6038121 | doi = 10.1126/science.aar5045 | bibcode = 2018Sci...360.1462E }}

Belgium's first palliative home care team was established in 1987, and the first palliative care unit and hospital care support teams were established in 1991. A strong legal and structural framework for palliative care was established in the 1990s, which divided the country into areas of 30, where palliative care networks were responsible for coordinating palliative services. Home care was provided by palliative support teams, and each hospital and care home recognized to have a palliative support team. In 1999, Belgium ranked second (after the United Kingdom) in the number of palliative care beds per capita. In 2001, there was an active palliative care support team in 72% of hospitals and a specialized nurse or active support team in 50% nursing homes. Government resources for palliative care doubled in 2000, and in 2007 Belgium was ranked third out of 52 countries worldwide in terms of resources for palliative care. (Together with the United Kingdom and Ireland) to raise public awareness under the auspices of EoL 6 According to the Lien Foundation report, Belgium ranks 5th (out of 40 countries worldwide) for the overall level of mortality.{{Cite journal |last1=Andrew |first1=Erin VW |last2=Cohen |first2=Joachim |last3=Evans |first3=Natalie |last4=Meñaca |first4=Arantza |last5=Harding |first5=Richard |last6=Higginson |first6=Irene |last7=Pool |first7=Robert |last8=Gysels |first8=Marjolein |date=February 2013 |title=Social-cultural factors in end-of-life care in Belgium: A scoping of the research literature |url=http://journals.sagepub.com/doi/10.1177/0269216311429619 |journal=Palliative Medicine |language=en |volume=27 |issue=2 |pages=131–143 |doi=10.1177/0269216311429619 |pmid=22143040 |s2cid=25066723 |issn=0269-2163}}

• Advance health care directive
• Death midwife
• Liverpool Care Pathway
• My body, my choice
• Children's palliative care
• Physician assisted suicide
• Right to die
• Robert Martensen

{{reflist|30em}}

{{refbegin|30em}}

• {{cite journal | vauthors = Ellershaw J, Ward C | title = Care of the dying patient: the last hours or days of life | journal = BMJ | volume = 326 | issue = 7379 | pages = 30–34 | date = January 2003 | pmid = 12511460 | pmc = 1124925 | doi = 10.1136/bmj.326.7379.30 }}
• {{cite book |title=At Peace: Choosing a Good Death After a Long Life |year=2018 | vauthors = Harrington S |publisher=Grand Central Life & Style |isbn=978-1478917410 }}
• {{cite web | vauthors = Lock J | title = Coroners Court of Queensland. Findings of investigation. Non-inquest findings into the death of David Orton | pages = 1–13 | date = May 2018 | url = https://www.courts.qld.gov.au/__data/assets/pdf_file/0008/566072/nif-orton-d-20180511.pdf}}
• {{cite web | vauthors = Lynn J, Adamson DM | title = Living Well at the End of Life | quote = Adapting Health Care to Serious Chronic Illness in Old Age | url = https://www.rand.org/content/dam/rand/pubs/white_papers/2005/WP137.pdf | work = RAND Health | date = 2003 }}
• {{cite book | vauthors = Mazanec P, Bartel J | date = 2002 | chapter-url = http://www.deathreference.com/Sy-Vi/Symptoms-and-Symptom-Management.html | chapter = Symptoms and Symptom Management | veditors = Kastenbaum R | title = Macmillan Encyclopedia of Death and Dying | location = New York | publisher = Macmillan Reference USA | isbn = 0-02-865689-X }}
• {{cite web | vauthors = Mooallem J | date = 3 January 2017 | url = https://www.nytimes.com/2017/01/03/magazine/one-mans-quest-to-change-the-way-we-die.html | title = One Man's Quest to Change the Way We Die | quote = How B.J. Miller, a doctor and triple amputee, used his own experience to pioneer a new model of palliative care at a small, quirky hospice in San Francisco. | work = The New York Times }}

{{refend}}

• {{cite web | url = https://www.nlm.nih.gov/medlineplus/endoflifeissues.html | title = End of Life Issues | work = MedlinePlus }}
• {{cite web | url = http://endlink.lurie.northwestern.edu/index.cfm | title = EndLink - Resource for End of Life Care Education | work = Robert H. Lurie Comprehensive Cancer Center | publisher = Northwestern University | archive-url = https://web.archive.org/web/20101118043654/http://endlink.lurie.northwestern.edu/index.cfm | archive-date = 2010-11-18 }}
• {{cite web | url = http://www.nhs.uk/livewell/endoflifecare/Pages/Endoflifecarehome.aspx | title = End of life care | work = NHS Choices | date = 29 May 2018 }}
• {{cite web | url = http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277 | title = End of Life Care Strategy - promoting high quality care for all adults at the end of life | publisher = UK Department of Health | work = Publications policy and guidance }}
• {{cite web | url = http://www.survivorshipatoz.org/sub.php?tid=137 | title = Survivorship A to Z: End-Of-Life | work = Survivorship }}
• {{cite web | url = http://www.thirteen.org/bid/ | title = Before I Die: Medical Care and Personal Choices | work = Thirteen/WNET | publisher = Public Broadcasting Service | date = 22 April 1997 }} The program explores the medical, ethical, and social issues surrounding end-of-life care in America today.

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Category:Bioethics

Category:Medical aspects of death

Category:Caregiving