Terminal illness

Accurately identifying the start of terminal status is important because it usually occasions a review of treatment goals. Although there is no single official definition, there are four typical characteristics for determining whether a person has a terminal illness: • The person is expected to die from this illness (i.e., not from old age). • The illness cannot be cured (or it is medically unlikely) and is expected to get worse. • The illness has reached an advanced stage. • The statistically likely remaining lifespan is measured in weeks or months, rather than years or decades. For example, four different US federal laws define the maximum expected lifespan in four different ways: no more than six months, nine months, 12 months, or 24 months. When the remaining lifespan is expected to be days and the physical process of dying has begun, the term active dying may be used instead. == Communicating terminal status ==

Most terminally ill people do not experience additional distress from honest prognosis discussions beyond their existing distress from the illness itself, – rather than bluntly saying "No matter what we do, your daughter is almost certainly going to die from this cancer, probably within the next few months." == 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. 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. 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. 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. 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. 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 constipated. • has fallen and appears hurt. • is depressed and wants to harm themselves. • refuses to take prescribed medications, raising 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. 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. Palliative care is an attempt to improve patients' quality-of-life and comfort, and also provide support for family members and carers. 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. 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. There exist inequities in availability of opioids to terminal patients, especially in countries where opioid access is limited. 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. 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. 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. For patients who are interested in liver transplantation, patients with acute liver failure have the highest priority over patients with cirrhosis alone. 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. 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. 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 decides 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. 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. 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" 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. 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. 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." == Refusal of nutrition and hydration == People who feel they are near the end of their life often refuse food or water. Published studies indicate that "within the context of adequate palliative care, the refusal of food and fluids does not contribute to suffering among the terminally ill", and might actually contribute to a comfortable passage from life: "At least for some persons, starvation does correlate with reported euphoria." == 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. 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. 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. Healthcare spending Healthcare during the last year of life is costly, especially for patients who used hospital services often during end-of-life. In fact, according to Langton et al., there were "exponential increases in service use and costs as death approached." 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. 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. 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. Many recent studies have shown that palliative care and hospice options as an alternative are much less expensive for end-of-life patients. == 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. 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, therapy, or both, but doctors often do not realize the extent of terminal patients' depression. 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. 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. 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. Grief counseling and grief therapy may also be recommended for family members after a loved one's death. == Death ==

When dying, patients often worry about their quality of life towards the end, including emotional and physical suffering. 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. Having an advance directive can improve end-of-life care. 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. 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: • Assurance of effective pain and symptom management. • Education about death and its aftermath, especially as it relates to decision-making. • Completion of any significant goals, such as resolving past conflicts. == See also ==