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Terminal illness or end-stage disease is a disease that cannot be 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, rather than fatal 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. An illness which will result in premature death, even if that death may be many years away, is called a life-limiting illness. An illness which is lifelong but not life-shortening is called a chronic condition.
Terminal patients have options for disease management after diagnosis. Examples include Caregiver, continued treatment, Palliative care and hospice care, and 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.
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 Death anxiety, and family and caregivers may struggle with psychological burdens. Psychotherapeutic interventions may alleviate some of these burdens, and is often incorporated into palliative care.
When 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. However, many healthcare providers are uncomfortable telling people or their families that they are dying. To avoid uncomfortable conversations, they will withhold information and evade questions.
They may feel pressure from family members to give pleasant news or to preserve the false appearance of hope. They often want to avoid the emotional outbursts that are associated with people understanding the medical situation accurately. For example, they will use death-denying language such as "She has a life-limiting diagnosis" – a term that makes the inevitable death seem less inevitable – 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." (2017). 9781526415523, SAGE Publications. ISBN 9781526415523
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.
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, 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.
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.University of Texas Cancer therapy and research center. "Terminal Cancer Overview" 2010-02-09.
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. Physical Needs of the Person With Terminal Cancer University of Virginia. Retrieved on 2010-02-09
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.
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.
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.
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.
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.
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.
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.
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.
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:
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."
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.
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.
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.
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.
It is important for loved ones to show their support for the patient during these times and to listen to his or her concerns.
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.
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.
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.
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.
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).
Having an advance directive can improve end-of-life care.
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.
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.
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.
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.
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