Terminal illness

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Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. [1] An illness which is lifelong but not fatal is a chronic condition.

Contents

Terminal patients have options for disease management after diagnosis. Examples include caregiving, continued treatment, palliative and hospice care, and physician-assisted suicide. Decisions regarding management are made by the patient and their family, although medical professionals may offer recommendations of services available to terminal patients. [2] [3]

Lifestyle after diagnosis varies depending on management decisions and the nature of the disease, and there may be restrictions depending on the condition of the patient. Terminal patients may experience depression or anxiety associated with impending death, and family and caregivers may struggle with psychological burdens. Psychotherapeutic interventions may alleviate some of these burdens, and is often incorporated into palliative care. [2] [4]

Because terminal patients are aware of their impending deaths, they have time to prepare for care, such as advance directives and living wills, which have been shown to improve end-of-life care. While death cannot be avoided, patients can strive to die a death seen as good. [5] [6] [7]

Management

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. [8]

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 treatments such as radical dietary modifications. Patients' choices about different treatments may change over time. [9]

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 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. [10] [11] [12] [13]

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  psychological  support and ensure that the individual is comfortable. [14]

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. [15]

In most cases, the caregiver works along with physicians and follows professional instructions. Caregivers may call the physician or a nurse if the individual:

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. [16] [17]

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. [18]

Palliative care is an attempt to improve patients' quality-of-life and comfort, and also provide support for family members and carers. [19] Additionally, it lowers hospital admissions costs. However, needs for palliative care are often unmet whether due to lack of government support and also possible stigma associated with palliative care. For these reasons, the World Health Assembly recommends development of palliative care in health care systems. [2]

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. [20] [18]

Hospice care

While hospitals focus on treating the disease, hospices focus on improving patient quality-of-life until death. A common misconception is that hospice care hastens death because patients "give up" fighting the disease. However, patients in hospice care often live the same length of time as patients in the hospital. A study of 3850 liver cancer patients found that patients who received hospice care, and those who did not, survived for the same amount of time. In fact, a study of 3399 adult lung cancer patients showed that patients who received hospice care actually survived longer than those who did not. Additionally, in both of these studies, patients receiving hospice care had significantly lower healthcare expenditures. [21] [22]

Hospice care allows patients to spend more time with family and friends. Since patients are in the company of other hospice patients, they have an additional support network and can learn to cope together. Hospice patients are also 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. [18]

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. [23]

There exist inequities in availability of opioids to terminal patients, especially in countries where opioid access is limited. [2]

A common symptom that many terminal patients experience is 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. [24]

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. [25]

Continued treatment

Some terminal patients opt to continue extensive treatments in hope of a miracle cure, whether by participating in experimental treatments and clinical trials 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. [18] [26]

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. [27] [28] [29]

For patients who are interested in liver transplantation, patients with acute liver failure have the highest priority over patients with only cirrhosis. [30] 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. [31] 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. [32]

Physician-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. [3]

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.

In the United States, PAS or 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. [33]

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. [34]

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:

Again, there are also arguments that there are enough protections in the law that the slippery slope is avoided. For example, the 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. [36]

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. [37] [34] [38]

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." [34]

Other groups such as the 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. [33]

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. [39]

Medical care

Many aspects of medical care are different for terminal patients compared to patients in the hospital for other reasons.

Doctor–patient relationships

Doctor–patient relationships are crucial in any medical setting, and especially so for terminal patients. There must be an inherent trust in the doctor to provide the best possible care for the patient. In the case of terminal illness, there is often ambiguity in communication with the patient about their condition. While terminal condition prognosis is often a grave matter, doctors do not wish to quash all hope, for it could unnecessarily harm the patient's mental state and have unintended consequences. However, being overly optimistic about outcomes can leave patients and families devastated when negative results arise, as is often the case with terminal illness. [26]

Mortality predictions

Often, a patient is considered terminally ill when his or her estimated life expectancy is six months or less, under the assumption that the disease will run its normal course based on previous data from other patients. The six-month standard is arbitrary, and best available estimates of longevity may be incorrect. Though a given patient may properly be considered terminal, this is not a guarantee that the patient will die within six months. Similarly, a patient with a slowly progressing disease, such as AIDS, may not be considered terminally ill if the best estimate of longevity is greater than six months. However, this does not guarantee that the patient will not die unexpectedly early. [40]

In general, physicians slightly overestimate the survival time of terminally ill cancer patients, so that, for example, a person who is expected to live for about six weeks would likely die around four weeks. [41]

A recent systematic review on palliative patients in general, rather than specifically cancer patients, states the following: "Accuracy of categorical estimates in this systematic review ranged from 23% up to 78% and continuous estimates over-predicted actual survival by, potentially, a factor of two." There was no evidence that any specific type of clinician was better at making these predictions. [42]

Healthcare spending

Healthcare during the last year of life is costly, especially for patients who used hospital services often during end-of-life. [43]

In fact, according to Langton et al., there were "exponential increases in service use and costs as death approached." [44]

Many dying terminal patients are also brought to the emergency department (ED) at the end of life when treatment is no longer beneficial, raising costs and using limited space in the ED. [45]

While there are often claims about "disproportionate" spending of money and resources on end-of-life patients, data have not proven this type of correlation. [46]

The cost of healthcare for end-of-life patients is 13% of annual healthcare spending in the U.S. However, of the group of patients with the highest healthcare spending, end-of-life patients only made up 11% of these people, meaning the most expensive spending is not made up mostly of terminal patients. [47]

Many recent studies have shown that palliative care and hospice options as an alternative are much less expensive for end-of-life patients. [21] [22] [20]

Psychological impact

Coping with impending death is a hard topic to digest universally. Patients may experience grief, fear, loneliness, depression, and anxiety among many other possible responses. Terminal illness can also lend patients to become more prone to psychological illness such as depression and anxiety disorders. Insomnia is a common symptom of these. [4]

It is important for loved ones to show their support for the patient during these times and to listen to his or her concerns. [48]

People who are terminally ill may not always come to accept their impending death. For example, a person who finds strength in  denial  may never reach a point of acceptance or accommodation and may react negatively to any statement that threatens this  defense mechanism. [48]

Impact on patient

Depression is relatively common among terminal patients, and the prevalence increases as patients become sicker. Depression causes quality of life to go down, and a sizable portion of patients who request assisted suicide are depressed. These negative emotions may be heightened by lack of sleep and pain as well. Depression can be treated with antidepressants and/or therapy, but doctors often do not realize the extent of terminal patients' depression. [4]

Because depression is common among terminal patients, the American College of Physicians recommends regular assessments for depression for this population and appropriate prescription of antidepressants. [6]

Anxiety disorders are also relatively common for terminal patients as they face their mortality. Patients may feel distressed when thinking about what the future may hold, especially when considering the future of their families as well. It is important to note, however, that some palliative medications may facilitate anxiety. [4]

Coping for patients

Caregivers may listen to the concerns of terminal patients to help them reflect on their emotions. Different forms of psychotherapy and psychosocial intervention, which can be offered with palliative care, may also help patients think about and overcome their feelings. According to Block, "most terminally ill patients benefit from an approach that combines emotional support, flexibility, appreciation of the patient's strengths, a warm and genuine relationship with the therapist, elements of life-review, and exploration of fears and concerns." [4]

Impact on family

Terminal patients' families often also suffer psychological consequences. If not well equipped to face the reality of their loved one's illness, family members may develop depressive symptoms and even have increased mortality. Taking care of sick family members may also cause stress, grief, and worry. Additionally, financial burden from medical treatment may be a source of stress. [49] Parents of terminally ill children also face additional challenges in addition to mental health stressors including difficulty balancing caregiving and maintaining employment. Many report feeling as if they have to "do it all" by balancing caring for their chronically ill child, limiting absence from work, and supporting their family members. [50] Children of terminally ill parents often experience a role reversal in which they become the caretakers of their adult parents. In taking on the burden of caring for their sick parent and assuming the responsibilities they can no longer accomplish, many children also experience significant declines in academic performance. [51]

Coping for family

Discussing the anticipated loss and planning for the future may help family members accept and prepare for the patient's death. Interventions may also be offered for anticipatory grief. In the case of more serious consequences such as depression, a more serious intervention or therapy is recommended. Upon the death of someone who is terminally ill, many family members that served as caregivers are likely to experience declines in their mental health. [52] Grief counseling and grief therapy may also be recommended for family members after a loved one's death. [53]

Dying

When dying, patients often worry about their quality of life towards the end, including emotional and physical suffering. [3]

In order for families and doctors to understand clearly what the patient wants for themselves, it is recommended that patients, doctors, and families all convene and discuss the patient's decisions before the patient becomes unable to decide. [5] [6] [54]

Advance directives

At the end of life, especially when patients are unable to make decisions on their own regarding treatment, it is often up to family members and doctors to decide what they believe the patients would have wanted regarding their deaths, which is often a heavy burden and hard for family members to predict. An estimated 25% of American adults have an advance directive, meaning the majority of Americans leave these decisions to be made by family, which can lead to conflict and guilt. Although it may be a difficult subject to broach, it is important to discuss the patient's plans for how far to continue treatment should they become unable to decide. This must be done while the patient is still able to make the decisions, and takes the form of an advance directive. The advance directive should be updated regularly as the patient's condition changes so as to reflect the patient's wishes. [55] [17]

Some of the decisions that advance directives may address include receiving fluids and nutrition support, getting blood transfusions, receiving antibiotics, resuscitation (if the heart stops beating), and intubation (if the patient stops breathing). [56]

Having an advance directive can improve end-of-life care. [54]

It is highly recommended by many research studies and meta-analyses for patients to discuss and create an advance directive with their doctors and families. [5] [54] [6]

Do-not-resuscitate

One of the options of care that patients may discuss with their families and medical providers is the do-not-resuscitate (DNR) order. This means that if the patient's heart stops, CPR and other methods to bring back heartbeat would not be performed. This is the patient's choice to make and can depend on a variety of reasons, whether based on personal beliefs or medical concerns. DNR orders can be medically and legally binding depending on the applicable jurisdiction. [57]

Decisions like these should be indicated in the advance directive so that the patient's wishes can be carried out to improve end-of-life care. [55]

Symptoms near death

A variety of symptoms become more apparent when a patient is nearing death. Recognizing these symptoms and knowing what will come may help family members prepare. [56]

During the final few weeks, symptoms will vary largely depending on the patient's disease. During the final hours, patients usually will reject food and water and will also sleep more, choosing not to interact with those around them. Their bodies may behave more irregularly, with changes in breathing, sometimes with longer pauses between breaths, irregular heart rate, low blood pressure, and coldness in the extremities. It is important to note, however, that symptoms will vary per patient. [58]

Good death

Patients, healthcare workers, and recently bereaved family members often describe a "good death" in terms of effective choices made in a few areas: [59]

In the last hours of life, palliative sedation may be recommended by a doctor or requested by the patient to ease the symptoms of death until they die. Palliative sedation is not intended to prolong life or hasten death; it is merely meant to relieve symptoms. [60]

See also

Related Research Articles

<span class="mw-page-title-main">Assisted suicide</span> Suicide undertaken with aid from another person

Assisted suicide – alternately referred to as medical aid in dying – means a procedure in which people take medications to end their own lives with the help of others, usually medical professionals. The term usually refers to physician-assisted suicide (PAS), which is an end of life measure for a person suffering a painful, terminal illness. Once it is determined that the person's situation qualifies under the physician-assisted suicide laws for that location, the physician's assistance is usually limited to writing a prescription for a lethal dose of drugs.

Dying is the final stage of life which will eventually lead to death. Diagnosing dying is a complex process of clinical decision-making, and most practice checklists facilitating this diagnosis are based on cancer diagnoses.

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

<span class="mw-page-title-main">Geriatrics</span> Specialty that focuses on health care of elderly people

Geriatrics, or geriatric medicine, is a medical specialty focused on providing care for the unique health needs of the elderly. The term geriatrics originates from the Greek γέρων geron meaning "old man", and ιατρός iatros meaning "healer". It aims to promote health by preventing, diagnosing and treating disease in older adults. There is no defined age at which patients may be under the care of a geriatrician, or geriatric physician, a physician who specializes in the care of older people. Rather, this decision is guided by individual patient need and the caregiving structures available to them. This care may benefit those who are managing multiple chronic conditions or experiencing significant age-related complications that threaten quality of daily life. Geriatric care may be indicated if caregiving responsibilities become increasingly stressful or medically complex for family and caregivers to manage independently.

In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.

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<span class="mw-page-title-main">Cicely Saunders</span> English nurse, social worker, physician and writer

Dame Cicely Mary Strode Saunders was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the importance of palliative care in modern medicine, and opposing the legalisation of voluntary euthanasia.

<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

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<span class="mw-page-title-main">Hospice care in the United States</span>

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Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.

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References

  1. ↑ Hui, David; Nooruddin, Zohra; Didwaniya, Neha; Dev, Rony; De La Cruz, Maxine; Kim, Sun Hyun; Kwon, Jung Hye; Hutchins, Ronald; Liem, Christiana (1 January 2014). "Concepts and Definitions for "Actively Dying," "End of Life," "Terminally Ill," "Terminal Care," and "Transition of Care": A Systematic Review". Journal of Pain and Symptom Management. 47 (1): 77–89. doi:10.1016/j.jpainsymman.2013.02.021. PMC   3870193 . PMID   23796586.
  2. 1 2 3 4 Lima, Liliana De; Pastrana, Tania (2016). "Opportunities for Palliative Care in Public Health". Annual Review of Public Health. 37 (1): 357–374. doi: 10.1146/annurev-publhealth-032315-021448 . PMID   26989831.
  3. 1 2 3 Hendry, Maggie; Pasterfield, Diana; Lewis, Ruth; Carter, Ben; Hodgson, Daniel; Wilkinson, Clare (1 January 2013). "Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying". Palliative Medicine. 27 (1): 13–26. doi:10.1177/0269216312463623. ISSN   0269-2163. PMID   23128904. S2CID   40591389.
  4. 1 2 3 4 5 Block, Susan D. (2006). "Psychological Issues in End-of-Life Care". Journal of Palliative Medicine. 9 (3): 751–772. doi:10.1089/jpm.2006.9.751. PMID   16752981.
  5. 1 2 3 "Advance Care Planning, Preferences for Care at the End of Life | AHRQ Archive". archive.ahrq.gov. Retrieved 24 October 2017.
  6. 1 2 3 4 Qaseem, Amir; Snow, Vincenza; Shekelle, Paul; Casey, Donald E.; Cross, J. Thomas; Owens, Douglas K.; Physicians*, for the Clinical Efficacy Assessment Subcommittee of the American College of (15 January 2008). "Evidence-Based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life: A Clinical Practice Guideline from the American College of Physicians". Annals of Internal Medicine. 148 (2): 141–6. doi: 10.7326/0003-4819-148-2-200801150-00009 . ISSN   0003-4819. PMID   18195338.
  7. 1 2 Steinhauser, Karen E.; Clipp, Elizabeth C.; McNeilly, Maya; Christakis, Nicholas A.; McIntyre, Lauren M.; Tulsky, James A. (16 May 2000). "In Search of a Good Death: Observations of Patients, Families, and Providers". Annals of Internal Medicine. 132 (10): 825–32. doi:10.7326/0003-4819-132-10-200005160-00011. ISSN   0003-4819. PMID   10819707. S2CID   14989020.
  8. ↑ "Last Days of Life". National Cancer Institute. 8 June 2007. Retrieved 25 November 2017.
  9. ↑ Fried TR, O'Leary J, Van Ness P, Fraenkel L (2007). "Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment". Journal of the American Geriatrics Society. 55 (7): 1007–14. doi:10.1111/j.1532-5415.2007.01232.x. PMC   1948955 . PMID   17608872.
  10. ↑ <Please add first missing authors to populate metadata.> (1996). "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". JAMA. 276 (4): 313–8. doi:10.1001/jama.1996.03540040057033. PMID   8656544.
  11. ↑ Grealish L, Lomasney A, Whiteman B (June 2000). "Foot massage. A nursing intervention to modify the distressing symptoms of pain and nausea in patients hospitalized with cancer". Cancer Nurs. 23 (3): 237–43. doi:10.1097/00002820-200006000-00012. PMID   10851775.
  12. ↑ Alimi D, Rubino C, Pichard-Léandri E, Fermand-Brulé S, Dubreuil-Lemaire ML, Hill C (November 2003). "Analgesic effect of auricular acupuncture for cancer pain: a randomized, blinded, controlled trial". J. Clin. Oncol. 21 (22): 4120–6. doi:10.1200/JCO.2003.09.011. PMID   14615440.
  13. ↑ "Complementary and Alternative Therapies and End-of-Life Care" . Retrieved 25 November 2017.
  14. ↑ Mitnick, Sheryl; Leffler, Cathy; Hood, Virginia L. (2010). "Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships/". Journal of General Internal Medicine. 25 (3): 255–260. doi:10.1007/s11606-009-1206-3. ISSN   0884-8734. PMC   2839338 . PMID   20063128.
  15. ↑ University of Texas Cancer therapy and research center. "Terminal Cancer Overview" Archived 23 July 2011 at the Wayback Machine 2010-02-09.
  16. ↑ Physical Needs of the Person With Terminal Cancer University of Virginia. Retrieved on 2010-02-09
  17. 1 2 Mitnick, Sheryl; Leffler, Cathy; Hood, Virginia L. (2010). "Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships". Journal of General Internal Medicine. 25 (3): 255–260. doi:10.1007/s11606-009-1206-3. ISSN   0884-8734. PMC   2839338 . PMID   20063128.
  18. 1 2 3 4 Buss, Mary K.; Rock, Laura K.; McCarthy, Ellen P. (1 February 2017). "Understanding Palliative Care and Hospice: A Review for Primary Care Providers". Mayo Clinic Proceedings. 92 (2): 280–286. doi: 10.1016/j.mayocp.2016.11.007 . PMID   28160875.
  19. ↑ Australia, Healthdirect (31 October 2019). "Palliative care". www.healthdirect.gov.au. Retrieved 22 January 2020.
  20. 1 2 Smith, Samantha; Brick, Aoife; O'Hara, Sinéad; Normand, Charles (1 February 2014). "Evidence on the cost and cost-effectiveness of palliative care: A literature review" (PDF). Palliative Medicine. 28 (2): 130–150. doi:10.1177/0269216313493466. ISSN   0269-2163. PMID   23838378. S2CID   206488146.
  21. 1 2 Chiang, Jui-Kun; Kao, Yee-Hsin (April 2015). "The impact of hospice care on survival and cost saving among patients with liver cancer: a national longitudinal population-based study in Taiwan". Supportive Care in Cancer. 23 (4): 1049–1055. doi: 10.1007/s00520-014-2447-1 . ISSN   1433-7339. PMID   25281229. S2CID   25395902.
  22. 1 2 Chiang, Jui-Kun; Kao, Yee-Hsin; Lai, Ning-Sheng (25 September 2015). "The Impact of Hospice Care on Survival and Healthcare Costs for Patients with Lung Cancer: A National Longitudinal Population-Based Study in Taiwan". PLOS ONE. 10 (9): e0138773. Bibcode:2015PLoSO..1038773C. doi: 10.1371/journal.pone.0138773 . ISSN   1932-6203. PMC   4583292 . PMID   26406871.
  23. ↑ Caraceni, Augusto; Hanks, Geoffrey; Kaasa, Stein; Bennett, Michael I; Brunelli, Cinzia; Cherny, Nathan; Dale, Ola; De Conno, Franco; Fallon, Marie (1 February 2012). "Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC". The Lancet Oncology. 13 (2): e58–e68. doi:10.1016/S1470-2045(12)70040-2. PMID   22300860.
  24. ↑ Barnes, Hayley; McDonald, Julie; Smallwood, Natasha; Manser, Renée (31 March 2016). "Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness". Cochrane Database of Systematic Reviews. 3 (7): CD011008. doi:10.1002/14651858.cd011008.pub2. PMC   6485401 . PMID   27030166.
  25. ↑ "Palliative Medications". www.caresearch.com.au. Retrieved 2 November 2017.
  26. 1 2 Chen, Chen Hsiu; Kuo, Su Ching; Tang, Siew Tzuh (1 May 2017). "Current status of accurate prognostic awareness in advanced/terminally ill cancer patients: Systematic review and meta-regression analysis". Palliative Medicine. 31 (5): 406–418. doi:10.1177/0269216316663976. ISSN   0269-2163. PMID   27492160. S2CID   3426326.
  27. ↑ Suthanthiran, M.; Strom, T. B. (11 August 1994). "Renal transplantation". The New England Journal of Medicine. 331 (6): 365–376. doi:10.1056/NEJM199408113310606. ISSN   0028-4793. PMID   7832839.
  28. ↑ Kasiske, B. L.; Ramos, E. L.; Gaston, R. S.; Bia, M. J.; Danovitch, G. M.; Bowen, P. A.; Lundin, P. A.; Murphy, K. J. (July 1995). "The evaluation of renal transplant candidates: clinical practice guidelines. Patient Care and Education Committee of the American Society of Transplant Physicians". Journal of the American Society of Nephrology. 6 (1): 1–34. doi: 10.1681/ASN.V611 . ISSN   1046-6673. PMID   7579061.
  29. ↑ Steinman, T. I.; Becker, B. N.; Frost, A. E.; Olthoff, K. M.; Smart, F. W.; Suki, W. N.; Wilkinson, A. H.; Clinical Practice Committee, American Society of Transplantation (15 May 2001). "Guidelines for the referral and management of patients eligible for solid organ transplantation". Transplantation. 71 (9): 1189–1204. doi: 10.1097/00007890-200105150-00001 . ISSN   0041-1337. PMID   11397947. S2CID   39592793.
  30. ↑ Ostapowicz, George; Fontana, Robert J.; Schiødt, Frank V.; Larson, Anne; Davern, Timothy J.; Han, Steven H. B.; McCashland, Timothy M.; Shakil, A. Obaid; Hay, J. Eileen (17 December 2002). "Results of a prospective study of acute liver failure at 17 tertiary care centers in the United States". Annals of Internal Medicine. 137 (12): 947–954. doi:10.7326/0003-4819-137-12-200212170-00007. ISSN   1539-3704. PMID   12484709. S2CID   11390513.
  31. ↑ Lee, W. M. (16 December 1993). "Acute liver failure". The New England Journal of Medicine. 329 (25): 1862–1872. doi:10.1056/NEJM199312163292508. ISSN   0028-4793. PMID   8305063.
  32. ↑ "Policies - OPTN". optn.transplant.hrsa.gov. Retrieved 2 August 2019.
  33. 1 2 Compassion and Choices. "Medical Aid in Dying Is Not Assisted Suicide" (PDF). Compassion and Choices.
  34. 1 2 3 Sulmasy, Lois Snyder; Mueller, Paul S. (17 October 2017). "Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper". Annals of Internal Medicine. 167 (8): 576–578. doi: 10.7326/M17-0938 . ISSN   0003-4819. PMID   28975242.
  35. ↑ Sulmasy, Daniel P.; Travaline, John M.; Mitchell, Louise A.; Ely, E. Wesley (2016). "Non-faith-based arguments against physician-assisted suicide and euthanasia". The Linacre Quarterly. 83 (3): 246–257. doi:10.1080/00243639.2016.1201375. ISSN   0024-3639. PMC   5102187 . PMID   27833206.
  36. ↑ "Oregon Health Authority : Oregon Revised Statute : Death with Dignity Act : State of Oregon". www.oregon.gov. Retrieved 4 December 2017.
  37. ↑ "Physician-Assisted Suicide | American Medical Association". www.ama-assn.org. Retrieved 4 December 2017.
  38. ↑ Anderson, Ryan. "Always Care, Never Kill: How Physician-Assisted Suicide Endangers the Weak, Corrupts Medicine, Compromises the Family, and Violates Human Dignity and Equality". The Heritage Foundation. Retrieved 4 December 2017.
  39. ↑ De Lima, Liliana; Woodruff, Roger; Pettus, Katherine; Downing, Julia; Buitrago, Rosa; Munyoro, Esther; Venkateswaran, Chitra; Bhatnagar, Sushma; Radbruch, Lukas (2017). "International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide". Journal of Palliative Medicine. 20 (1): 8–14. doi:10.1089/jpm.2016.0290. PMC   5177996 . PMID   27898287.
  40. ↑ "Terminal Illness". Archived from the original on 13 October 2007.
  41. ↑ Glare P, Virik K, Jones M, et al. (2003). "A systematic review of physicians' survival predictions in terminally ill cancer patients". BMJ . 327 (7408): 195–8. doi:10.1136/bmj.327.7408.195. PMC   166124 . PMID   12881260.
  42. ↑ White, Nicola; Reid, Fiona; Harris, Adam; Harries, Priscilla; Stone, Patrick (25 August 2016). "A Systematic Review of Predictions of Survival in Palliative Care: How Accurate Are Clinicians and Who Are the Experts?". PLOS ONE. 11 (8): e0161407. Bibcode:2016PLoSO..1161407W. doi: 10.1371/journal.pone.0161407 . ISSN   1932-6203. PMC   4999179 . PMID   27560380.
  43. ↑ Riley, Gerald F; Lubitz, James D (2010). "Long-Term Trends in Medicare Payments in the Last Year of Life". Health Services Research. 45 (2): 565–576. doi:10.1111/j.1475-6773.2010.01082.x. ISSN   0017-9124. PMC   2838161 . PMID   20148984.
  44. ↑ Langton, Julia M; Blanch, Bianca; Drew, Anna K; Haas, Marion; Ingham, Jane M; Pearson, Sallie-Anne (2014). "Retrospective studies of end-of-life resource utilization and costs in cancer care using health administrative data: A systematic review". Palliative Medicine. 28 (10): 1167–1196. doi:10.1177/0269216314533813. PMID   24866758. S2CID   42436569.
  45. ↑ Forero, Roberto; McDonnell, Geoff; Gallego, Blanca; McCarthy, Sally; Mohsin, Mohammed; Shanley, Chris; Formby, Frank; Hillman, Ken (2012). "A Literature Review on Care at the End-of-Life in the Emergency Department". Emergency Medicine International. 2012: 486516. doi: 10.1155/2012/486516 . ISSN   2090-2840. PMC   3303563 . PMID   22500239.
  46. ↑ Scitovsky, Anne A (2005). ""The High Cost of Dying": What Do the Data Show?". The Milbank Quarterly. 83 (4): 825–841. doi:10.1111/j.1468-0009.2005.00402.x. ISSN   0887-378X. PMC   2690284 . PMID   16279969.
  47. ↑ Aldridge, Melissa D.; Kelley, Amy S. (2015). "The Myth Regarding the High Cost of End-of-Life Care". American Journal of Public Health. 105 (12): 2411–2415. doi:10.2105/AJPH.2015.302889. ISSN   0090-0036. PMC   4638261 . PMID   26469646.
  48. 1 2 "Supporting a terminally ill loved one". Mayo Clinic. Retrieved 7 November 2017.
  49. ↑ Lima, Liliana De; Pastrana, Tania (2016). "Opportunities for Palliative Care in Public Health". Annual Review of Public Health. 37 (1): 357–374. doi: 10.1146/annurev-publhealth-032315-021448 . PMID   26989831.
  50. ↑ Kish, A. M.; Newcombe, P. A.; Haslam, D. M. (May 2018). "Working and caring for a child with chronic illness: A review of current literature". Child: Care, Health and Development. 44 (3): 343–354. doi:10.1111/cch.12546. PMID   29341191. S2CID   4754378.
  51. ↑ Chen, Cliff Yung-Chi (June 2017). "Effects of Parental Chronic Illness on Children's Psychosocial and Educational Functioning: a Literature Review". Contemporary School Psychology. 21 (2): 166–176. doi:10.1007/s40688-016-0109-7. ISSN   2159-2020. S2CID   256432947.
  52. ↑ Aoun, Samar M; Bentley, Brenda; Funk, Laura; Toye, Chris; Grande, Gunn; Stajduhar, Kelli J (May 2013). "A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions". Palliative Medicine. 27 (5): 437–446. doi:10.1177/0269216312455729. hdl: 20.500.11937/34995 . ISSN   0269-2163. PMID   22907948. S2CID   34463161.
  53. ↑ "Last Days of Life". National Cancer Institute. 18 December 2007. Retrieved 26 November 2017.
  54. 1 2 3 Brinkman-Stoppelenburg, Arianne; Rietjens, Judith AC; van der Heide, Agnes (1 September 2014). "The effects of advance care planning on end-of-life care: A systematic review". Palliative Medicine. 28 (8): 1000–1025. doi:10.1177/0269216314526272. ISSN   0269-2163. PMID   24651708. S2CID   2447618.
  55. 1 2 "Frequently asked questions". www.cancer.org. Retrieved 30 October 2017.
  56. 1 2 "Last Days of Life". National Cancer Institute. 18 December 2007. Retrieved 26 November 2017.
  57. ↑ Osinski, Aart; Vreugdenhil, Gerard; Koning, Jan de; Hoeven, Johannes G. van der (1 February 2017). "Do-not-resuscitate orders in cancer patients: a review of literature". Supportive Care in Cancer. 25 (2): 677–685. doi:10.1007/s00520-016-3459-9. ISSN   0941-4355. PMID   27771786. S2CID   3879244.
  58. ↑ "Hospice Patients Alliance: Signs of Approaching Death". www.hospicepatients.org. Retrieved 26 November 2017.
  59. ↑ Steinhauser K, Clipp E, McNeilly M, Christakis N, McIntyre L, Tulsky J (16 May 2000). "In search of a good death: observations of patients, families, and providers". Annals of Internal Medicine. 132 (10): 825–32. doi:10.7326/0003-4819-132-10-200005160-00011. PMID   10819707. S2CID   14989020.
  60. ↑ Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert (1 September 2008). "Palliative Sedation: A Review of the Research Literature". Journal of Pain and Symptom Management. 36 (3): 310–333. doi: 10.1016/j.jpainsymman.2007.10.004 . PMID   18657380.

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