Advanced Directives
As individuals become more knowledgeable about medical procedures and practices, some people want the psychological comfort of ensuring that their wishes and desires are known in advance. This way, if the person ever becomes incapacitated or can no longer direct their own care, their loved ones will know what they want. For this reason, a person might write a living will or advance directive, which is a written legal document that details specific interventions a person wants - or doesn't want. For example, a person in the last stages of a terminal illness may not want to receive life-extending treatments. A person may also include a Do Not Resuscitate (DNR) Order and would share this with their family and close friends. A DNR Order states that if a person stops breathing or their heart stops beating, medical personnel such as doctors and nurses are NOT to take steps to revive or resuscitate the patient. However, it can be complicated because doctors do have the ability to make decisions for the patient, depending on many variables.
Advanced care planning refers to all documents that pertain to end-of-life care. These include advance directives and medical orders. Advance directives include documents that mention a health care agent and living wills. These are initiated by the patient. Living wills are written or video statements that outline the health care interventions the person wishes under certain circumstances. A living will can also include a health care proxy, which appoints a specific person to make medical decisions for you if you are unable to speak for yourself. People’s desire for living wills and DNRs are often influenced by their spiritual beliefs, culture, and upbringing. Durable power of attorney for health care names the person who should make health care decisions in the event that the patient is incapacitated. In contrast, medical orders are crafted by a medical professional on behalf of a seriously ill patient. Unlike advanced directives, as these are doctor’s orders, they must be followed by other medical personnel. Medical orders include Physician Orders for Life-sustaining Treatment (POLST), do-not-resuscitate, do-not-intubate, or do-not-hospitalize. In some instances, medical orders may be limited to the facility in which they were written. Several states have endorsed POLST so that they are applicable across health care settings (IOM, 2015).
Despite the fact that many people in the United States worry about the financial burden of end-of-life care, “more than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured those wishes in writing or through conversation” (IOM, 2015, p. 18).
Curative, Palliative, and Hospice Care
When individuals become ill, they need to make choices about the treatment they wish to receive. A person's age, type of illness, and personal beliefs about dying greatly affect the type of treatment chosen.
Curative care is designed to overcome and cure disease and illness (Fox, 1997). Its aim is to promote complete recovery, not just to reduce symptoms or pain. An example of curative care would be chemotherapy. While curing illness and disease is an important goal of medicine, it is not its only goal. As a result, some have criticized the curative model as ignoring the other goals of medicine, including preventing illness, restoring functional capacity, relieving suffering, and caring for those who cannot be cured.
Palliative care focuses on providing comfort and relief from physical and emotional pain to patients throughout their illness, even while being treated (NIH, 2007). In the past, palliative care was confined to offering comfort for the dying. Now it is offered whenever patients suffer from chronic illnesses, such as cancer or heart disease (IOM, 2015). Palliative care is also part of hospice programs.
Hospice emerged in the United Kingdom in the mid-20th century as a result of the work of Cicely Saunders. This approach became popularized in the U.S. by the work of Elizabeth Kübler-Ross (IOM, 2015), and by 2012 there were 5,500 hospice programs in the U.S. (National Hospice and Palliative Care Organization (NHPCO), 2013).
Hospice care, whether at home, in a hospital, nursing home, or hospice facility involves a team of professionals and volunteers who provide terminally ill patients with medical, psychological, and spiritual support, along with support for their families (Shannon, 2006). The aim of hospice is to help the dying be as free from pain as possible, and to comfort both the patients and their families during a difficult time. In order to enter hospice, a patient must be diagnosed as terminally ill with an anticipated death within 6 months (IOM, 2015). The patient is allowed to go through the dying process without invasive treatments. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.
The basic elements of hospice include:
- Care of the patient and family as a single unit
- Pain and symptom management for the patient
- Having access to day and night care
- Coordination of all medical services
- Social work, counseling, and pastoral services
- Bereavement counseling for the family up to one year after the patient’s death
Elizabeth Kübler-Ross (1969), who worked with the founders of hospice care, described the process of an individual accepting their own death. She proposed 5 stages of grief: denial, anger, bargaining, depression, and acceptance. Most individuals experience these stages, but the stages may occur in different orders, depending on the individual. In addition, not all people experience all of the stages. It is also important to note that some psychologists believe that the more a dying person fights death, the more likely the person is to remain stuck in the denial phase. This could make it difficult for the dying person to face death with dignity. However, other psychologists believe that not facing death until the very end is an adaptive coping mechanism for some people.
Whether due to illness or old age, not everyone facing death or the loss of a loved one experiences the negative emotions outlined in the Kübler-Ross model (Nolen-Hoeksema & Larson, 1999). For example, research suggests that people with strong spiritual beliefs are better able to cope with death because of their faith in an afterlife or reincarnation (depending on their particular belief) and because of social support from spiritual community associations (Hood, Spilka, Hunsberger, & Corsuch, 1996; McIntosh, Silver, & Wortman, 1993; Paloutzian, 1996; Samarel, 1991; Wortman & Park, 2008).
