Editing Terminal illness (section)

== Management ==
{{main|End-of-life care}}
By definition, there is not a cure or adequate treatment for terminal illnesses.  However, some kinds of medical treatments may be appropriate anyway, such as treatment to reduce pain or ease breathing.<ref>{{Cite web|url=https://www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning/last-days-hp-pdq|title=Last Days of Life|website=National Cancer Institute|date=8 June 2007|access-date=2017-11-25}}</ref>

Some terminally ill patients stop all debilitating treatments to reduce unwanted side effects.  Others continue aggressive treatment in the hope of an unexpected success. Still others reject conventional medical treatment and pursue [[unproven cancer therapy|unproven treatments]] such as radical dietary modifications.  Patients' choices about different treatments may change over time.<ref name="pmid17608872">{{cite journal |vauthors=Fried TR, O'Leary J, Van Ness P, Fraenkel L |title=Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment  |journal=Journal of the American Geriatrics Society |volume=55 |issue=7 |pages=1007–14 |year=2007 |pmid=17608872 |doi=10.1111/j.1532-5415.2007.01232.x |pmc=1948955}}</ref>  People who pursue aggressive treatment usually do not understand that their illness has reached a terminal stage, and they are pursuing treatment because they do not understand it to be [[Futile medical care|futile]].<ref name=":0" />

[[Palliative care]] is normally offered to terminally ill patients, regardless of their overall disease management style, if it seems likely to help manage symptoms such as pain and improve quality of life. [[Hospice|Hospice care]], which can be provided at home or in a long-term care facility, additionally provides emotional and spiritual support for the patient and loved ones.  Some complementary approaches, such as [[relaxation therapy]], [[massage]], and [[acupuncture]] may relieve some symptoms and other causes of suffering.<ref>{{cite journal|author1=<Please add first missing authors to populate metadata.>|year=1996|title=Integration of behavioral and relaxation approaches into the treatment of chronic pain and insomnia. NIH Technology Assessment Panel on Integration of Behavioral and Relaxation Approaches into the Treatment of Chronic Pain and Insomnia|journal=JAMA|volume=276|issue=4|pages=313–8|doi=10.1001/jama.1996.03540040057033|pmid=8656544}}</ref><ref>{{cite journal|date=June 2000|title=Foot massage. A nursing intervention to modify the distressing symptoms of pain and nausea in patients hospitalized with cancer|journal=Cancer Nurs|volume=23|issue=3|pages=237–43|doi=10.1097/00002820-200006000-00012|pmid=10851775|vauthors=Grealish L, Lomasney A, Whiteman B}}</ref><ref>{{cite journal|date=November 2003|title=Analgesic effect of auricular acupuncture for cancer pain: a randomized, blinded, controlled trial|journal=J. Clin. Oncol.|volume=21|issue=22|pages=4120–6|doi=10.1200/JCO.2003.09.011|pmid=14615440|vauthors=Alimi D, Rubino C, Pichard-Léandri E, Fermand-Brulé S, Dubreuil-Lemaire ML, Hill C}}</ref><ref>{{Cite news|url=https://www.ahcmedia.com/articles/85339-complementary-and-alternative-therapies-and-end-of-life-care|title=Complementary and Alternative Therapies and End-of-Life Care|access-date=2017-11-25}}</ref>

=== Caregiving ===
Terminal patients often need a [[caregiver]], who could be a [[nurse]], licensed practical nurse or a family member. Caregivers can help patients receive medications to reduce pain and control symptoms of [[nausea]] or [[vomiting]]. They can also assist the individual with daily living activities and movement. Caregivers provide assistance with food and [[Psychology|psychological]] support and ensure that the individual is comfortable.<ref name="Mitnick-2010a">{{Cite journal|last1=Mitnick|first1=Sheryl|last2=Leffler|first2=Cathy|last3=Hood|first3=Virginia L.|year=2010|title=Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships/|journal=Journal of General Internal Medicine|volume=25|issue=3|pages=255–260|doi=10.1007/s11606-009-1206-3|issn=0884-8734|pmc=2839338|pmid=20063128}}</ref>

The patient's family may have questions and most caregivers can provide information to help ease the mind. Doctors generally do not provide estimates for fear of instilling false hopes or obliterate an individual's hope.<ref>University of Texas Cancer therapy and research center. [http://www.ctrc.net/ctrc_2_2.cfm?db_content=psycopingterminal "Terminal Cancer Overview"] {{Webarchive|url=https://web.archive.org/web/20110723065603/http://www.ctrc.net/ctrc_2_2.cfm?db_content=psycopingterminal |date=23 July 2011 }} 2010-02-09.</ref>

In most cases, the caregiver works along with physicians and follows professional instructions. Caregivers may call the physician or a nurse if the individual:
* experiences excessive pain.
* is in distress or having difficulty [[breathing]].
* has difficulty passing urine or is [[constipation|constipated]].
* has fallen and appears hurt.
* is depressed and wants to harm themselves.
* refuses to take prescribed medications, raising [[Medical ethics|ethical]] concerns best addressed by a person with more extensive formal training.
* or if the caregiver does not know how to handle the situation.

Most caregivers become the patient's listeners and let the individual express fears and concerns without judgment. Caregivers reassure the patient and honor all advance directives. Caregivers respect the individual's need for privacy and usually hold all information confidential.<ref>[http://healthsystem.virginia.edu/uvahealth/hub_cancer/phyneeds.cfm Physical Needs of the Person With Terminal Cancer] University of Virginia. Retrieved on 2010-02-09</ref><ref name="Mitnick-2010b">{{Cite journal|last1=Mitnick|first1=Sheryl|last2=Leffler|first2=Cathy|last3=Hood|first3=Virginia L.|year=2010|title=Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships|journal=Journal of General Internal Medicine|volume=25|issue=3|pages=255–260|doi=10.1007/s11606-009-1206-3|issn=0884-8734|pmc=2839338|pmid=20063128}}</ref>

=== Palliative care ===
Palliative care focuses on addressing patients' needs after disease diagnosis. While palliative care is not disease treatment, it addresses patients' physical needs, such as pain management, offers emotional support, caring for the patient psychologically and spiritually, and helps patients build support systems that can help them get through difficult times. Palliative care can also help patients make decisions and come to understand what they want regarding their treatment goals and quality of life.<ref name="Buss-2017">{{Cite journal|last1=Buss|first1=Mary K.|last2=Rock|first2=Laura K.|last3=McCarthy|first3=Ellen P.|date=2017-02-01|title=Understanding Palliative Care and Hospice: A&nbsp;Review for Primary Care Providers|journal=Mayo Clinic Proceedings|volume=92|issue=2|pages=280–286|doi=10.1016/j.mayocp.2016.11.007|pmid=28160875|doi-access=free}}</ref>

Palliative care is an attempt to improve patients' [[Quality of life (healthcare)|quality-of-life]] and comfort, and also provide support for family members and carers.<ref>{{Cite web|url=https://www.healthdirect.gov.au/palliative-care|title=Palliative care|last=Australia|first=Healthdirect|date=2019-10-31|website=www.healthdirect.gov.au|access-date=2020-01-22}}</ref> Additionally, it lowers hospital admissions costs. However, needs for palliative care are often unmet whether due to lack of government support and also possible [[Palliative care#Acceptance|stigma]] associated with palliative care. For these reasons, the World Health Assembly recommends development of palliative care in health care systems.<ref name="Lima-2016a"/>

[[Palliative care]] and [[hospice]] care are often confused, and they have similar goals. However, hospice care is specifically for terminal patients while palliative care is more general and offered to patients who are not necessarily terminal.<ref name="Smith-2014">{{Cite journal|last1=Smith|first1=Samantha|last2=Brick|first2=Aoife|last3=O'Hara|first3=Sinéad|last4=Normand|first4=Charles|date=2014-02-01|title=Evidence on the cost and cost-effectiveness of palliative care: A literature review|journal=Palliative Medicine|volume=28|issue=2|pages=130–150|doi=10.1177/0269216313493466|pmid=23838378|s2cid=206488146|issn=0269-2163|url=https://issuelab.org/resources/18050/18050.pdf }}</ref><ref name="Buss-2017"/>

=== Hospice care ===
While hospitals focus on treating the disease, [[hospice]]s focus on improving patient [[Quality of life (healthcare)|quality-of-life]] until death. Hospice patients are able to live at peace away from a hospital setting; they may live at home with a hospice provider or at an inpatient hospice facility.<ref name="Buss-2017" />

A common misconception is that hospice care hastens death because patients "give up" fighting the disease. However, people in hospice care often live the same length of time as patients in the hospital, or longer.  Additionally, people receiving hospice care have significantly lower healthcare expenditures.<ref name="Chiang-2015a">{{Cite journal|last1=Chiang|first1=Jui-Kun|last2=Kao|first2=Yee-Hsin|date=April 2015|title=The impact of hospice care on survival and cost saving among patients with liver cancer: a national longitudinal population-based study in Taiwan|journal=Supportive Care in Cancer|volume=23|issue=4|pages=1049–1055|doi=10.1007/s00520-014-2447-1|issn=1433-7339|pmid=25281229|s2cid=25395902|doi-access=free}}</ref><ref name="Chiang-2015b">{{Cite journal|last1=Chiang|first1=Jui-Kun|last2=Kao|first2=Yee-Hsin|last3=Lai|first3=Ning-Sheng|date=2015-09-25|title=The Impact of Hospice Care on Survival and Healthcare Costs for Patients with Lung Cancer: A National Longitudinal Population-Based Study in Taiwan|journal=PLOS ONE|volume=10|issue=9|pages=e0138773|doi=10.1371/journal.pone.0138773|pmid=26406871|pmc=4583292|issn=1932-6203|bibcode=2015PLoSO..1038773C|doi-access=free}}</ref>

Hospice care allows patients to spend more time with family and friends. People in institutional (rather than home-care) hospice programs are also in the company of other hospice patients, which provides them with an additional support network.<ref name="Buss-2017" />

=== Medications for terminal patients ===
Terminal patients experiencing pain, especially cancer-related pain, are often prescribed opioids to relieve suffering. The specific medication prescribed, however, will differ depending on severity of pain and disease status.<ref name="Caraceni-2012">{{Cite journal|last1=Caraceni|first1=Augusto|last2=Hanks|first2=Geoffrey|last3=Kaasa|first3=Stein|last4=Bennett|first4=Michael I|last5=Brunelli|first5=Cinzia|last6=Cherny|first6=Nathan|last7=Dale|first7=Ola|last8=De Conno|first8=Franco|last9=Fallon|first9=Marie|date=2012-02-01|title=Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC|journal=The Lancet Oncology|volume=13|issue=2|pages=e58–e68|doi=10.1016/S1470-2045(12)70040-2|pmid=22300860}}</ref>

There exist inequities in availability of opioids to terminal patients, especially in countries where opioid access is limited.<ref name="Lima-2016a"/>

A common symptom that many terminal patients experience is [[Shortness of breath|dyspnea]], or difficulty with breathing. To ease this symptom, doctors may also prescribe opioids to patients. Some studies suggest that oral opioids may help with breathlessness. However, due to lack of consistent reliable evidence, it is currently unclear whether they truly work for this purpose.<ref name="Barnes-2016">{{Cite journal|volume = 3|last1=Barnes|first1=Hayley|last2=McDonald|first2=Julie|last3=Smallwood|first3=Natasha|last4=Manser|first4=Renée|date=2016-03-31|pages=CD011008|doi=10.1002/14651858.cd011008.pub2|pmid = 27030166|pmc=6485401|title = Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness|journal = Cochrane Database of Systematic Reviews|issue=7}}</ref>

Depending on the patient's condition, other medications will be prescribed accordingly. For example, if patients develop depression, antidepressants will be prescribed. Anti-inflammation and anti-nausea medications may also be prescribed.<ref name="Caresearch-2017">{{Cite web|url=https://www.caresearch.com.au/caresearch/ProfessionalGroups/NursesHubHome/Clinical/MedicationManagement/PalliativeMedications/tabid/1554/Default.aspx|title=Palliative Medications|website=www.caresearch.com.au|access-date=2017-11-02}}</ref>

=== Continued treatment ===
Some terminal patients opt to continue extensive treatments in hope of a miracle cure, whether by participating in experimental treatments and [[clinical trial]]s or seeking more intense treatment for the disease. Rather than to "give up fighting," patients spend thousands more dollars to try to prolong life by a few more months. What these patients often do give up, however, is quality of life at the end of life by undergoing intense and often uncomfortable treatment. A meta-analysis of 34 studies including 11,326 patients from 11 countries found that less than half of all terminal patients correctly understood their disease [[prognosis]], or the course of their disease and likeliness of survival. This could influence patients to pursue unnecessary treatment for the disease due to unrealistic expectations.<ref name="Buss-2017"/><ref name="Chen-2017">{{Cite journal|last1=Chen|first1=Chen Hsiu|last2=Kuo|first2=Su Ching|last3=Tang|first3=Siew Tzuh|date=2017-05-01|title=Current status of accurate prognostic awareness in advanced/terminally ill cancer patients: Systematic review and meta-regression analysis|journal=Palliative Medicine|volume=31|issue=5|pages=406–418|doi=10.1177/0269216316663976|pmid=27492160|s2cid=3426326|issn=0269-2163}}</ref>

=== Transplant ===
For patients with end stage [[kidney failure]], studies have shown that transplants increase the quality of life and decreases mortality in this population. In order to be placed on the organ transplant list, patients are referred and assessed based on criteria that ranges from current comorbidities to potential for organ rejection post transplant. Initial screening measures include: blood tests, pregnancy tests, serologic tests, urinalysis, drug screening, imaging, and physical exams.<ref>{{Cite journal|last1=Suthanthiran|first1=M.|last2=Strom|first2=T. B.|date=1994-08-11|title=Renal transplantation|journal=The New England Journal of Medicine|volume=331|issue=6|pages=365–376|doi=10.1056/NEJM199408113310606|issn=0028-4793|pmid=7832839}}</ref><ref>{{Cite journal|last1=Kasiske|first1=B. L.|last2=Ramos|first2=E. L.|last3=Gaston|first3=R. S.|last4=Bia|first4=M. J.|last5=Danovitch|first5=G. M.|last6=Bowen|first6=P. A.|last7=Lundin|first7=P. A.|last8=Murphy|first8=K. J.|date=July 1995|title=The evaluation of renal transplant candidates: clinical practice guidelines. Patient Care and Education Committee of the American Society of Transplant Physicians|journal=Journal of the American Society of Nephrology |volume=6|issue=1|pages=1–34|doi=10.1681/ASN.V611|issn=1046-6673|pmid=7579061|doi-access=free}}</ref><ref>{{Cite journal|last1=Steinman|first1=T. I.|last2=Becker|first2=B. N.|last3=Frost|first3=A. E.|last4=Olthoff|first4=K. M.|last5=Smart|first5=F. W.|last6=Suki|first6=W. N.|last7=Wilkinson|first7=A. H.|last8=Clinical Practice Committee, American Society of Transplantation|date=2001-05-15|title=Guidelines for the referral and management of patients eligible for solid organ transplantation|journal=Transplantation|volume=71|issue=9|pages=1189–1204|doi=10.1097/00007890-200105150-00001|issn=0041-1337|pmid=11397947|s2cid=39592793|doi-access=free}}</ref>

For patients who are interested in liver transplantation, patients with acute liver failure have the highest priority over patients with only cirrhosis.<ref>{{Cite journal|last1=Ostapowicz|first1=George|last2=Fontana|first2=Robert J.|last3=Schiødt|first3=Frank V.|last4=Larson|first4=Anne|last5=Davern|first5=Timothy J.|last6=Han|first6=Steven H. B.|last7=McCashland|first7=Timothy M.|last8=Shakil|first8=A. Obaid|last9=Hay|first9=J. Eileen|date=2002-12-17|title=Results of a prospective study of acute liver failure at 17 tertiary care centers in the United States|journal=Annals of Internal Medicine|volume=137|issue=12|pages=947–954|doi=10.7326/0003-4819-137-12-200212170-00007|issn=1539-3704|pmid=12484709|s2cid=11390513}}</ref> Acute liver failure patients will present with worsening symptoms of somnolence or confusion (hepatic encephalopathy) and thinner blood (increased INR) due to the liver's inability to make clotting factors.<ref>{{Cite journal|last=Lee|first=W. M.|date=1993-12-16|title=Acute liver failure|journal=The New England Journal of Medicine|volume=329|issue=25|pages=1862–1872|doi=10.1056/NEJM199312163292508|issn=0028-4793|pmid=8305063}}</ref> Some patients could experience portal hypertension, hemorrhages, and abdominal swelling (ascites). Model for End Stage Liver Disease (MELD) is often used to help providers decide and prioritize candidates for transplant.<ref>{{Cite web|url=https://optn.transplant.hrsa.gov/governance/policies/|title=Policies - OPTN|website=optn.transplant.hrsa.gov|access-date=2019-08-02}}</ref>

=== Physician-assisted suicide ===
[[Assisted suicide|Physician-assisted suicide]] (PAS) is highly controversial, and legal in only a few countries. In PAS, physicians, with voluntary written and verbal consent from the patient, give patients the means to die, usually through lethal drugs. The patient then chooses to "[[die with dignity]]," deciding on their own time and place to die. Reasons as to why patients choose PAS differ. Factors that may play into a patient's decision include future disability and suffering, lack of control over death, impact on family, healthcare costs, insurance coverage, personal beliefs, religious beliefs, and much more.<ref name="Hendry-2013"/>

PAS may be referred to in many different ways, such as aid in dying, assisted dying, death with dignity, and many more. These often depend on the organization and the stance they take on the issue. In this section of the article, it will be referred to as PAS for the sake of consistency with the pre-existing Wikipedia page: [[Assisted suicide|Assisted Suicide]].

In the United States, PAS or [[Medical aid in dying in the United States|medical aid in dying]] is legal in select states, including Oregon, Washington, Montana, Vermont, and New Mexico, and there are groups both in favor of and against legalization.<ref name="Compassion and Choices">{{Cite web|url=https://www.compassionandchoices.org/wp-content/uploads/2016/02/FS-Medical-Aid-in-Dying-is-Not-Assisted-Suicide-FINAL-1.27.16-Approved-for-Public-Distribution.pdf|title=Medical Aid in Dying Is Not Assisted Suicide|last=Compassion and Choices|website=Compassion and Choices}}</ref>

Some groups favor PAS because they do not believe they will have control over their pain, because they believe they will be a burden on their family, and because they do not want to lose autonomy and control over their own lives among other reasons. They believe that allowing PAS is an act of compassion.<ref name="Sulmasy-2017">{{Cite journal|last1=Sulmasy|first1=Lois Snyder|last2=Mueller|first2=Paul S.|date=2017-10-17|title=Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper|journal=Annals of Internal Medicine|volume=167|issue=8|pages=576–578|doi=10.7326/M17-0938|pmid=28975242|issn=0003-4819|doi-access=free}}</ref>

While some groups believe in personal choice over death, others raise concerns regarding insurance policies and potential for abuse. According to Sulmasy et al., the major non-religious arguments against physician-assisted suicide are quoted as follows:
* (1) "it offends me", suicide devalues human life;
* (2) slippery slope, the limits on euthanasia gradually erode;
* (3) "pain can be alleviated", palliative care and modern therapeutics more and more adequately manage pain;
* (4) physician integrity and patient trust, participating in suicide violates the integrity of the physician and undermines the trust patients place in physicians to heal and not to harm"<ref>{{Cite journal|last1=Sulmasy|first1=Daniel P.|last2=Travaline|first2=John M.|last3=Mitchell|first3=Louise A.|last4=Ely|first4=E. Wesley|year=2016|title=Non-faith-based arguments against physician-assisted suicide and euthanasia|journal=The Linacre Quarterly|volume=83|issue=3|pages=246–257|doi=10.1080/00243639.2016.1201375|issn=0024-3639|pmc=5102187|pmid=27833206}}</ref>
Again, there are also arguments that there are enough protections in the law that the slippery slope is avoided. For example, the [[Oregon Ballot Measure 16 (1994)|Death with Dignity Act in Oregon]] includes waiting periods, multiple requests for lethal drugs, a psychiatric evaluation in the case of possible depression influencing decisions, and the patient personally swallowing the pills to ensure voluntary decision.<ref>{{Cite web|url=http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx|title=Oregon Health Authority : Oregon Revised Statute : Death with Dignity Act : State of Oregon|website=www.oregon.gov|access-date=2017-12-04}}</ref>

Physicians and medical professionals also have disagreeing views on PAS. Some groups, such as the [[American College of Physicians]] (ACP), the [[American Medical Association]] (AMA), the [[World Health Organization]], [[American Nurses Association]], Hospice Nurses Association, [[American Psychiatric Association]], and more have issued position statements against its legalization.<ref>{{Cite web|url=https://www.ama-assn.org/delivering-care/physician-assisted-suicide|title=Physician-Assisted Suicide {{!}} American Medical Association|website=www.ama-assn.org|access-date=2017-12-04}}</ref><ref name="Sulmasy-2017" /><ref>{{Cite web|url=http://www.heritage.org/health-care-reform/report/always-care-never-kill-how-physician-assisted-suicide-endangers-the-weak|archive-url=https://web.archive.org/web/20170206170606/http://www.heritage.org/health-care-reform/report/always-care-never-kill-how-physician-assisted-suicide-endangers-the-weak|url-status=unfit|archive-date=6 February 2017|title=Always Care, Never Kill: How Physician-Assisted Suicide Endangers the Weak, Corrupts Medicine, Compromises the Family, and Violates Human Dignity and Equality|last=Anderson|first=Ryan|website=The Heritage Foundation|access-date=2017-12-04}}</ref>

The ACP's argument concerns the nature of the doctor-patient relationship and the tenets of the medical profession. They state that instead of using PAS to control death: "through high-quality care, effective communication, compassionate support, and the right resources, physicians can help patients control many aspects of how they live out life's last chapter."<ref name="Sulmasy-2017" />

Other groups such as the [[American Medical Student Association|American Medical Students Association]], the [[American Public Health Association]], the [[American Medical Women's Association]], and more support PAS as an act of compassion for the suffering patient.<ref name="Compassion and Choices" />

In many cases, the argument on PAS is also tied to proper palliative care. The International Association for Hospice and Palliative Care issued a position statement arguing against considering legalizing PAS unless comprehensive palliative care systems in the country were in place. It could be argued that with proper palliative care, the patient would experience fewer intolerable symptoms, physical or emotional, and would not choose death over these symptoms. Palliative care would also ensure that patients receive proper information about their disease prognosis as not to make decisions about PAS without complete and careful consideration.<ref>{{Cite journal|last1=De Lima|first1=Liliana|last2=Woodruff|first2=Roger|last3=Pettus|first3=Katherine|last4=Downing|first4=Julia|last5=Buitrago|first5=Rosa|last6=Munyoro|first6=Esther|last7=Venkateswaran|first7=Chitra|last8=Bhatnagar|first8=Sushma|last9=Radbruch|first9=Lukas|title=International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide|journal=Journal of Palliative Medicine|volume=20|issue=1|pages=8–14|doi=10.1089/jpm.2016.0290|pmid=27898287|pmc=5177996|year=2017}}</ref>