Terminal illness
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, 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 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.
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.
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.
Definition
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.
- The illness cannot be cured 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.
Communicating terminal status
Most terminally ill people do not experience additional distress from honest prognosis discussions beyond their existing distress from the illness itself, and they usually value knowing whether their realistic lifespan is likely to be "weeks", "months", or "years", even if more specific estimates are unavailable. However, many healthcare providers avoid telling them this because the healthcare providers are uncomfortable with death or perceive it as a professional failure. To avoid admitting that the person will inevitably die from an incurable condition, they may withhold information or, if pressed, give overly optimistic answers. For example, if the typical person in that situation usually lives for two to six months, they may say only the larger number. They may rationalize the inflated claim by thinking of hopeful possibilities, such as an unproven treatment being attempted, or because they know that life expectancy is an imperfect estimate and could be both shorter or longer than expected.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."
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.
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.
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.
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.
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.
Hospice care
While hospitals focus on treating the disease, hospices focus on improving patient 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.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 hospice programs are also in the company of other hospice patients, which provides them with an additional support network.
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.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.