End of life options in addition to the washington state death with dignity act
People considering the option of Death with Dignity (DWD) should be aware of the following options.
Not Starting treatment or Stopping Treatment
For some terminally ill people, aggressive treatment may not be helpful and may prolong the dying process. Under some circumstances, aggressive treatment may increase suffering, impair a person’s remaining quality of life, or even shorten life.
Many people are unaware that stopping treatment can result in a peaceful death. For example, people on dialysis for kidney failure may be able to die peacefully by stopping dialysis. However, stopping medical treatments may increase discomfort or suffering. Consulting with your physician and arranging for palliative (comfort) care are essential before stopping treatment.
Under some circumstances stopping treatment can be combined with hospice and palliative care and/or voluntary stopping eating and drinking (see below) to shorten the dying process and reduce suffering.
HOSPICE AND PALLIATIVE (COMFORT) CARE
Palliative care and hospice care are often confused, yet they are very similar when it comes to the most important issue for dying people: care.
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness, with comfort and quality of life as primary goals. It provides relief from distressing symptoms including pain, shortness of breath, nausea, problems with sleep, anxiety, and side effects of medications. It is important to note that palliative care is for anyone with a serious illness. It is available for any age and any stage of an illness, and may include curative treatment. People usually receive palliative care at clinics or hospitals, but home visits are becoming more common.
Hospice is a form of palliative care that seeks to optimize the quality of life at the end of life, while neither hindering nor hastening the dying process. It is an important Medicare benefit for terminally ill patients who may only have months to live. People who receive hospice care no longer receive curative treatment for their underlying disease. Hospice is not a place, but rather a form of medical care that enables the probability of a peaceful death for most people. It is covered by Medicare, Medicaid, HMOs (such as Kaiser Permanente), the Veterans Administration, and most private health insurers.
To qualify for hospice, a person usually has six months or less to live and will be required to decline further curative treatments. A referral from a doctor, who usually remains your primary care physician during hospice care, is required. Hospice caregivers control pain and other symptoms and provide counseling, family support, and many other services. Additionally, hospice helps people remain in control and die at home, where most people prefer to die. For those who cannot remain at home, inpatient hospice facilities may be available. Hospice can also be provided in long-term care facilities, such as nursing homes.
While hospice has no legal role in the Death with Dignity (DWD) process, some hospices – particularly those affiliated with religious organizations – are less supportive of DWD than others. If having hospice support for the decision to pursue the option of DWD is important, be sure to question potential hospice providers about their policies. Most hospices will not deny care to a patient pursing the option of DWD, although they may choose to opt out of supporting a patient on the day of ingesting medications.
End of Life Washington believes that hospice is an essential component of end-of-life care and encourages all individuals who have received a terminal diagnosis to enroll in hospice. Hospice is essential for terminally ill people who choose to stop treatment and/or voluntarily stop eating and drinking, especially if they wish to remain in their homes.
For more information, request or see our handout, The Importance of Hospice, or go to the Washington State Hospice and Palliative Care Organization’s website, www.wshpco.org.
Voluntary Stop Eating and Drinking (VSED)
When people die naturally of diseases such as cancer, they often lose their appetites and eventually stop eating altogether. Some people hasten the dying process the same way, by VSED. If a person stops eating and drinking, death may come as early as a few days, but more commonly one to three weeks. It is especially important to avoid sips of water or other fluids, as this may prolong the process. A person who begins VSED prior to its natural occurrence should expect hunger and thirst for a few days, so it is very important to have swabs for dry mouth and reliable access to medication to decrease or eliminate symptoms.
When done properly, VSED usually results in a peaceful, humane death, and many people have used this method successfully. End of Life Washington recommends that people choosing VSED discuss their decision with family members, caregivers, and involved medical providers to prevent them from undermining the process by offering or encouraging the intake of food or water. Make sure they are knowledgeable in helping people use VSED. End of Life Washington believes that hospice or palliative care is essential during VSED.
Under some circumstances, VSED may also be utilized to hasten death for individuals who have an incurable, progressive illness which is eventually terminal, but not necessarily within the six months required for the Death with Dignity Act. Examples are illnesses such as Parkinson’s, MS, other neurological diseases, and the early stages of dementia when the person is still legally competent.
For more information, request or see our handout, Voluntary Stopping Eating and Drinking and watch this TEDx Talk in which Phyllis Shacter, the widow of a client of End of Life Washington, makes a powerful statement about her husband’s choice to voluntarily stop eating and drinking. She also has an informative website about VSED and a book called Choosing To Die: A Personal Story: Elective Death by Voluntarily Stopping Eating and Drinking (VSED) in the Face of Degenerative Disease.
Unlike adequate pain and symptom management, however, palliative sedation is not necessarily a “right.” While it can be requested, it is up to the medical provider to determine if it is appropriate.
Palliative sedation, also referred to as terminal sedation, is the practice of relieving difficult-to-manage distress for a terminally ill person in the last days and hours of life, usually by means of a sedative drug which renders the patient unconscious. Palliative sedation is usually provided in a hospital or a skilled nursing or inpatient hospice facility. All nutrition and hydration is stopped, and the patient usually dies within a few days.
If having the option of palliative sedation is important, discuss it with hospice or other medical providers well before it becomes necessary.
End of Life Washington provides advice and support to people considering all end-of-life decisions, including Death with Dignity. For more information about any of these end-of-life options and to request our free client support services, contact End of Life Washington.