In my last post, I discussed some general propositions about Voluntarily Stopping Eating and Drinking (VSED). In this post, I look at some VSED issues in greater detail.
Dr. Timothy Quill, a palliative care physician in New York with VSED experience, advises that, “if you’re thinking about this option, somebody with serious palliative care experience should be involved with you . . . [to] make sure [you’re] getting first rate palliation.”
If palliative care is an essential ingredient for anyone considering VSED, I find that it is widely misunderstood. I tend to think of palliative care as comfort care, though that may be inadequate to fully describe its role in medicine. Palliative care is not just for the end of life or those who are terminally ill. It should be available for a wide range of people suffering from a variety of medical conditions and diseases from the time they are diagnosed until they die.
If you have a chronic, life-limiting medical condition, you should receive palliative care. Ann Mulvihill, the Director of Palliative Care Services at Danbury Hospital in Connecticut has explained it this way – “Palliative care is for ANY patient with a chronic illness who is experiencing a decreased quality of life because of symptoms related to their illness or treatment, like renal dialysis, oxygen therapy or chemotherapy.”
Palliative care and hospice
Palliative care should be a part of hospice, a special program mainly for those with six months or less to live. For these people, hospice is a kind of palliative care in which all curative treatment has been ended in favor of relieving undesirable symptoms (including pain, fatigue, anxiety, nausea, and more) that arise from a medical condition or from earlier treatments for that condition. But palliative care should be available to anyone who fits within Mulvihill’s explanation, whether they have heart disease, lung disease, neurological disease, dementia, or another life-limiting medical condition. Its goal is to control unwanted or troubling symptoms to get a patient through treatments and advance care planning, and enhance the patient’s quality of life.
When the focus of care changes from treatment to end-of-life care, hospice begins, often with assistance from the palliative care providers, who may initiate a discussion of advance care planning if that is not already in place. But palliative care should have been available before a patient receives hospice services, and it should continue during care in the hospice system.
Hospice services in the home and institutional settings
Frequently, people say that someone is “in hospice” without specifying whether that person is receiving services at home or in an institutional setting.
When a person is at home, most hour-by-hour care is provided by someone other than a hospice staff member. When my mother was in her final illness, she received round-the-clock care from several family members and a paid care-giver. Hospice provided periodic personal care services, such as bathing, a nurse to check on her periodically in person and by phone, a social worker, and a chaplain, with phone consultations between the nurse and a physician as needed. We were fortunate that the hospice consulting physician was also my mother’s primary care physician, so he knew much more about her than the average hospice physician would likely know.
When a person receives hospice services while in a hospital, nursing home, or private hospice facility, the hour-by-hour care may be provided by employees of that facility, though family, friends, and outside paid care-givers may also be involved. Hospice also provides specialized equipment that may be needed by patients to make them more comfortable, such as special beds, oxygen supplies, wheelchairs and transfer chairs, medications prescribed by the physician, medical supplies, and other comfort care products that may be needed.
VSED symptoms that should be ameliorated
If a person has chosen VSED and has stopped eating and drinking, hospice may provide morphine or other pain medicines, moisturizers for the mouth and nasal passages, artificial saliva, and anything else needed to ease any unwanted symptoms, including anxiety, general discomfort (revealed by stiffening or grimacing spontaneously), confusion, agitation, hallucinations, delirium, dyspnea, extreme fatigue, weakness, or seizures, to name some common symptoms that may occur.
Whenever someone suggests that they know or have heard that a patient who chose VSED had a terrible dying experience, I always want to know about the quality of palliative care that person received. While I do not have vast personal experience with VSED, the experiences I have had and those I have read about cause me to believe that anyone who chooses VSED can have undesired symptoms managed by appropriate palliative care.
Choosing a hospice service
Before entering a hospice program, if a person plans to ease their dying experience using VSED, there should be full and frank discussions with the hospice staff about the program’s support for VSED and the level of palliative care that will be provided. Over the past fifteen years, those who have studied VSED have developed clinical recommendations for implementing VSED in the hospice setting:
• Assess for decision-making capacity to make a voluntary decision on choices, screening for depression.
• Engage in discussions around diagnosis, prognosis, and goals of care.
• Provide palliative care consultation services for front-line nurses.
• Deliver excellent mouth care needed to reduce thirst.
If you are considering VSED, before entering any hospice program, these steps should be discussed with the program or programs you are considering. If one hospice program does not seem supportive of VSED or does not have sufficient experience with the process, other hospices should be contacted until a satisfactory hospice provider is located. In the town of just over 50,000 in which I live, at least five hospice services are readily available. The same care needed when selecting a hospice program applies to institutional settings, as well.
If I were planning to use VSED to ease my dying, I would be especially wary of any hospice that is connected to a religious group that opposes any form of hastening death. This would include any hospice run by or associated with the Catholic Church or a Catholic hospital, all of which are controlled by the United States Conference of Catholic Bishops.
The controlling document that directs what Catholic hospitals and their programs can and cannot do for a patient is the Ethical and Religious Directives for Catholic Health Care Services. This document makes clear that Catholic doctrine will control the kind of health and medical services that will be provided. See Part Five, Issues in Care for the Seriously Ill and Dying, for a full exposition of what services will and will not be provided at the end of life. A reading of that section leads me to believe that the bishops accept, or even revere, suffering at the end of life and will not approve measures just to avoid suffering if such efforts might be construed as participating in intentionally hastening death.
Conclusion
If you are interested in VSED or believe you may want to consider it, I urge you to become familiar with the resources listed in last week’s post. I do not encourage anyone to hasten their own death, but I do support the right of all people to make such a choice. One of the ways that can be done, especially when other methods are not available, is through the use of VSED. The only caveat for me is that VSED must be done with all of the precautions discussed and referenced in both of these posts.
Your postings are very helpful to many patients with serious illness and those near the end of life. Thank you, Lamar. Today’s additional information about VSED adds excellent information for such situations, especially for loved ones of those who might enter hospice care. The heavy responsibility falls on the caregivers for those patients, and they are usually family or close loved ones. Therefore, it is essential they seek as much information about the choice of hospice as possible.
It is understood by most who treat patients near the end of life that providing medication and all comfort measures is their responsibility, so that the dying experience may be as free of distress as possible to patient and the loved ones. Because this means providing heavy sedation and/or pain medication in increasing dosage, your caution about the limitations found in some hospices, is well placed.
Hospice care, palliative care and VSED are all aspects of what should be included in the continuum of care for those approaching death, as should aid in dying, when the patient and family are seeking to avoid prolongation of suffering, when no hope of recovery is possible. Actually, when hospice service was first developed in the United States, by Florence Wald, in 1974. She recognized that hospice care should be part of patient autonomy, where the person suffering a condition that would end their life, should be able to request care that eased the dying process. Wald, having learned about hospice care from the leaders of such facilities in England, including Cicely Saunders who had created the concept in the U.K., had a somewhat different approach than Saunders, who was deeply religious and insisted on the Catholic dictum of “never hastening dying.” Wald stated that a range of options should be available to the patient, including “assisted suicide.” Unfortunately, as a sort of “corporate” approach to hospice has been evolved in the U.S., the national board of the Association of Hospices has decreed that no patient should have a hastened dying. The feature that is an improvement over the in-patient hospices of the U.K., is that of home hospice, which is the most frequent manner in which that care is offered in the U.S., with family, and patient able to control much of how dying occurs. Actually, in all hospice care, in or out of hospital facilities, the most frequent way that dying occurs is with VSED as has been confirmed by statistics about that manner of care. So, again, your columns are most helpful to those seeking as peaceful a way of dying, of which hospice care is one of the most frequent ways to have that available.