The Southeast regional conference brings together leading authorities with valuable insights from scholarly research, public policy and clinical challenges encountered when addressing critical end-of-life decision-making. VSED – Voluntarily Stopping Eating and Drinking – is an ethical, legal, and accessible choice for a competent person to end pain and suffering in all 50 US states.
The following articles are posted on this webpage if you scroll down. These VSED resources are intended to add to the understanding of those interested in attending the VSED 2017 Conference on April 6, 2017
- The national Alzheimer’s Association website: Feeding Issues in Advanced Dementia – Family-member’s choice regarding feeding – including the appropriateness of the VSED alternative choice
- VSED: Death With Dignity or Without? Mark Corbett, MD – Narrative Inquiry in Bioethics
- Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995, Paul van der Maas, MD, PhD, New England Journal of Medicine 1996.
- Hospice Care for Patients Who Choose to Hasten Death by Voluntarily Stopping Eating and Drinking – Judith K. Schwarz, PhD, MS, RN.
- Fasting: A Peaceful Way to Avoid a Prolonged Dying with Pain and Suffering Stanley Terman, MD – 25 min YouTube video
- Guide for the VSED At-Home Family Caregiver –
- ‘I’d Like to Choose my Own Way:’ VSED in the Non–Terminal Patient Adam Marks, MD – Narrative Inquiry in Bioethics
- The Decline of Tube Feeding for Dementia Patients Paula Span – NYTimes
- Our Medical Preparations for VSED Phyllis Shacter – website posting
The national Alzheimer’s Association website
Feeding Issues in Advanced Dementia
Family-member’s choice regarding feeding – including the appropriateness of the VSED alternative choice:
Can the decision to withhold or withdraw artificial nutrition be made by someone other than the individual (now incompetent by end-stage memory disease)?
The Association recommends early discussion of end-of-life decisions with their physician … in the absence of a patient-directive, a surrogate family member may make such feeding decision consistent with the person’s expressed wishes or best interests and consistent with state law.
Narrative Inquiry in Bioethics, 2016, Johns Hopkins University Press
VSED: Death With Dignity or Without?
Mark Corbett, MD MA, Associate Medical Director, Hospice and Palliative Care Center, Winston–Salem, NC
Abstract. Conceivably, in an ideal world, all patients with a life–limiting illness would receive optimal hospice and palliative care so that no one would ever wish to hasten their own death. The reality, however, is that despite provision of optimal hospice and palliative care, individuals with terminal illness experience suffering, loss of meaning, or deterioration in quality of life to the extent where they express the desire to expedite the dying process. While there has been extensive discussion surrounding physician–assisted death (PAD), there has been less attention paid to the practice of voluntary stopping eating and drinking (VSED) near the end of life. These twelve compelling narratives represent a dramatic groundswell of attention to the practice of VSED. Through my review of these narratives, numerous statements of significance emerged along with common ethical themes which bring to light matters that might otherwise remain idle. As such, integrity and autonomy become paramount while, unfortunately, logical fallacies like that of the slippery slope argument are asserted. Ultimately, the suffering that leads people to embrace VSED is compelling and must not be minimized. Therefore, this paper, while not comprehensive, is an attempt to dissect these major themes and offer recommendations for addressing concerns regarding end–of–life care that have surfaced during the VSED debate. It is through this endeavor that I will hopefully challenge prevailing assumptions and misconceptions that can only exist in an ideal world.
Introduction Perhaps in an ideal world every patient with a life–limiting illness would receive optimal hospice and palliative care so that no one would ever wish to hasten their own death. Unfortunately, the reality is that despite provision of optimal hospice and palliative care, individuals with terminal illness experience suffering, loss of meaning, or deterioration in quality of life to the extent where they express the desire to expedite the dying process. While there has been extensive discussion surrounding physician– assisted death (PAD), there has been less attention paid to the practice of voluntary stopping eating and drinking (VSED) near the end of life. These twelve compelling narratives represent a dramatic groundswell of attention to the practice of VSED. Through my review of these narratives numerous statements of significance emerged along with common ethical themes which bring to light matters that might otherwise remain quiescent. As such, it appears that the central arguments against VSED reject this practice in order to protect the integrity of the medical profession and physician; safeguard against error, abuse, and negative consequences for patients; and refute the practice as clinically necessary to providing compassionate care at the end of life. This paper, while not comprehensive, is an attempt to dissect these major themes and offer recommendations for addressing concerns regarding end–of–life care that have surfaced during the VSED debate. It is through this endeavor that I will hopefully challenge prevailing assumptions and misconceptions that can only exist in an ideal world. Ultimately, I hope we might discover more practical and valuable information that may impact theories, policies, and practice surrounding VSED.
full article available at Narrative Inquiry in Bioethics, 2016, Johns Hopkins University Press Journal of Hospice and Palliative Nursing. 2014;16(3):126-131.
New England Journal of Medicine 1996
Euthanasia, Physician-Assisted Suicide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990–1995
Paul J. van der Maas, M.D., Ph.D., et al ;
Edited highlights for the VSED 2017 resources
In the Netherlands, euthanasia and physician-assisted suicide have been practiced with increasing openness, although technically they remain illegal. …. In 1990–1991 a nationwide study of euthanasia and other medical practices related to the ending of life was conducted, commissioned by a governmental committee … it gave the first complete overview of medical decisions concerning the end of life in a single country. … In 1995–1996 we conducted a second nationwide study, almost identical to the first, in an evaluation of the new procedure. The purpose of the 1995 study was to make reliable estimates of the incidence of euthanasia and other medical practices pertaining to the end of life; to describe the patients, physicians, and circumstances involved; and to evaluate changes in these practices between 1990 and 1995.
METHODS … EMPIRICAL DEFINITIONS
Euthanasia was defined as the administration of drugs with the explicit intention of ending the patient’s life, at the patient’s explicit request. Physician-assisted suicide was defined as the prescription or supplying of drugs with the explicit intention of enabling the patient to end his or her own life (the administration of lethal drugs by both the patient and the physician was considered to be euthanasia). The ending of life without an explicit request was defined as the administration of drugs with the explicit intention of ending the patient’s life without a concurrent, explicit request by the patient. The alleviation of pain and symptoms with opioids was defined as the administration of doses large enough that there was a probable life-shortening effect. A decision not to treat was defined as the withholding or withdrawal of potentially life-prolonging treatment. ….
RESULTS INCIDENCE ESTIMATES …
- There were 34,500 requests for euthanasia at a later time in the course ofdisease, a 37 percent increase from the 1990 number.
- There were 9700 explicit requests for euthanasia or physician-assisted suicide at a particular time, a 9 percent increase from 1990.
- In the interviewstudy2.3 percent of all deaths resulted from euthanasia, as compared with 2.4 percent in the death-certificate study. In 1990 the rates were 1.9 and 1.7 percent, respectively.
- Assisted suicide occurred in 0.4 percent of deaths in the interview study and 0.2 percent of deaths in the death-certificate study, as compared with 0.3 and 0.2 percent, respectively, in 1990.
- In both 1995studies0.7 percent of deaths involved ending the patient’s life without the patient’s explicit, concurrent request. In 1990, 0.8 percent of deaths in the death-certificate study occurred in this way.
Euthanasia and Physician-Assisted Suicide
Of the physicians interviewed, 88 percent said they had received at least one request for euthanasia or physician-assisted suicide at a later time in the course of disease, whereas 77 percent had received at least one explicit request for a particular time. When asked if they had ever performed euthanasia or assisted in suicide, 53 percent confirmed that they had done so at some time, and 29 percent confirmed that they had done so in the preceding 24 months .
There were large differences among the three types of physicians. Among those who said they had never performed euthanasia or assisted in suicide, 35 percent said they could conceive of situations in which they would be prepared to do so. Among the remaining 12 percent, who could not conceive of such a situation, the majority said that they would be prepared to refer patients to a colleague if they requested euthanasia or assistance in suicide. These proportions are almost identical to those in the 1990 study.
Ending Life without the Explicit Request of the Patient
Among the physicians interviewed, 23 percent said that at some time they had ended a patient’s life without his or her explicit request, and 32 percent said that they had never done so but that they could conceive of a situation in which they would, whereas 45 percent said that they had never done so and could not conceive of any situation in which they would. The corresponding figures in the 1990 study were 27 percent, 32 percent, and 41 percent, respectively.The patients whose lives were ended without their explicit request also tended to be relatively young, and cancer was the predominant diagnosis (in the interview study, 60 percent of all cases involved cancer). In 57 percent of all cases, clinical specialists were involved. In about half of all the cases, either the decision was discussed with the patient earlier in the illness or the patient had expressed a wish for euthanasia if suffering became unbearable. In the other cases the patient was incompetent. In 95 percent of cases, the decision was discussed with colleagues, nursing staff, or relatives (or usually some combination of the three). In 64 percent of all cases in which life had been ended without the patient’s explicit request, morphine was the only drug administered, whereas in 18 percent neuromuscular relaxants were used in various combinations. In 33 percent of cases life was shortened by 24 hours at most, and in a further 58 percent it was shortened by at most one week. In the interview study the proportions were similar to those in the death-certificate study.Further scrutiny of the case histories in the interview study showed that decisions to end life without the patient’s request covered a wide range of situations, with a large group of patients having only a few hours or days to live, whereas a small number had a longer life expectancy but were evidently suffering greatly, with verbal contact no longer possible. The characteristics in Table 4 suggest that most of the cases in which life was ended without the patient’s explicit request were more similar to cases involving the use of large doses of opioids than to cases of euthanasia. As compared with 1990, there was a small decrease in the proportion of these cases.
Alleviation of Pain and Other Symptoms with Possible Life-Shortening Effects
Eighty-four percent of all respondents had at some time sought to alleviate a patient’s pain and other symptoms by administering opioids in such doses that the patient’s life might have been shortened (in 1990, 82 percent reported doing so). In 85 percent of all such cases in the death-certificate study, the physician said that he or she had no intention of hastening death, but had taken into account the probability or certainty that death would occur, whereas in the other 15 percent of cases the physician at least partly intended to hasten the patient’s death. The age and sex distribution of the patients in these cases was similar to that of all persons dying in the Netherlands, but more than half the cases involved cancer. Decisions of this type are relatively frequent in nursing homes, where about 16 percent of all deaths in the Netherlands occur. In 64 percent of cases the physician estimated that the patient’s life had been shortened by less than 24 hours, and in 16 percent it was shortened by less than one week . In 43 percent of cases the decision to administer large doses of opioids was discussed with the patient and either an explicit request was made or, if the patient was incompetent, there was knowledge of a previous wish. In 86 percent of cases in which opioids were administered and there was no information about the patient’s wishes, the patient was incompetent.
Decision to Forgo Treatment
Among the decisions to withhold or withdraw life-prolonging treatment, 66 percent were made with the intention of hastening death (or rather, of not prolonging life); in making the remaining decisions, the physician took into account the probability or the certainty that death would be hastened. In 10 percent of cases the decision involved artificial respiration; in 23 percent, tube feeding or artificial hydration; and in 2 percent, dialysis. The forgoing of other treatments (such as medication, surgery, or admission to the hospital for diagnostic purposes) generally affected survival less directly. The amount of time by which life was shortened was less than 24 hours in 42 percent of cases, less than one week in 28 percent, and over one month in 8 percent. Decisions to forgo treatment differed from the other practices studied. The patients tended to be older and were more often female, and the distribution of the diseases involved more or less followed the pattern of the causes of all deaths in the Netherlands. Decisions to forgo treatment were made relatively often by nursing home physicians.
We believe this study presents a reliable overview of medical decisions about the end of life in the Netherlands, one that includes developments since 1990. In almost all relevant respects, the interviews and the mailed questionnaires yielded similar results. …
- Data from other countries on physicians’ opinions about euthanasia and physician-assisted suicide and their actual use of these procedures are scarce.
- In a sample of U.S. oncologists, Emanuel et al. found that 57 percent had received a request for euthanasia or assisted death at some time, and that 14 percent had actually engaged in those practices.
- In a sample of general practitioners and hospital consultants in the United Kingdom studied by Ward and Tate, these proportions were 45 percent and 14 percent, respectively.
- Among physicians in South Australia studied by Stevens and Hassan, the proportions were 33 percent and 19 percent, and among Danish physicians studied by Folker et al. they were 30 percent and 5 percent.
- Lee et al. found that 21 percent of Oregon physicians had received a request for physician-assisted suicide in the past year and that 7 percent had written at least one lethal prescription at a patient’s request.
- In Washington State 12 percent of physicians had received requests for physician-assisted suicide and 4 percent had received a request for euthanasia during the preceding year. In both cases 24 percent of requests were granted. Although the comparability of the studies is limited, these figures are consistently lower than those we found.
Journal of Hospice and Palliative Nursing
Hospice Care for Patients Who Choose to Hasten Death by Voluntarily Stopping Eating and Drinking
Even with the best of palliative care, terminally ill patients with advanced disease occasionally think about dying and may wish for death to come sooner. It is also not uncommon for some patients to ask a trusted clinician for help in hastening death. How hospice team members understand the meaning of the request and the nature of the assistance they are asked to provide will determine how they respond. Although hospice clinicians frequently encounter patients who stop eating and drinking as a natural consequence of advanced disease, until recently, it was less common to meet patients who intentionally chose to fast in order to hasten their dying. As an increasing number of such cases are described in professional and lay literature, hospice clinicians will likely encounter more requests for information and support for voluntarily stopping eating and drinking (VSED). Given the diversity of views about the morality and/or legality of VSED, hospice and palliative care organizations will be challenged to respond in an organizationally coherent and clinically consistent fashion in the absence of clear written procedures and guidelines. A case study is presented of a patient who was neither imminently dying nor experiencing great physical pain when she requested hospice support for her decision to forego food and fluid as a means to hasten her death.
Marilyn was an experienced hospice nurse who recently joined the staff of a home hospice agency in a large Northeastern city. As she traveled to the senior living facility where E.M. was a resident, she reviewed what she knew about her 83-year-old patient. E.M. was independent, resilient, and rather set in “her way” of doing things. She had been successfully treated for both breast and lung cancer while still in her 60s and had a hip replaced when she was 75 years old. She quickly recovered after each medical intervention and resumed her active life in the Southern city, where she lived with her husband. With this history, she was shocked when her oncologist informed her there was no recommended treatment for the pelvic tumor that had metastasized throughout her abdomen. She promptly sought additional opinions, but the prognosis was confirmed, and hospice was recommended because it was thought she would die within the year. She rejected the hospice suggestion and continued to manage well for the next 2 years—until her husband died unexpectedly. She grew weaker, and her physical symptoms became harder to ignore. Her only child insisted she move back to the Northeast so he and his wife could more easily supervise her health care needs. She resisted as long as she could—she had never been close to her son, but ultimately recognized that she could no longer manage her own care. Her son moved her into a luxurious senior living facility and arranged for hospice support.
Marilyn had been seeing E.M. for about 6 weeks and recalled that although her pain was well managed with small doses of opiates, she was experiencing increasing difficulties with elimination. The possibility of bowel obstruction was a concern to Marilyn, but E.M. was far more worried about having an “accident”—a humiliating possibility that caused her to stay in her apartment to be close to her own bathroom. She ate little, lost weight and strength, and had to use a motorized scooter when she wished to socialize with other residents.
E.M. had strong opinions and felt comfortable sharing them with Marilyn. She did not enjoy visits from the hospice social worker and asked her to stop calling, but looked forward to seeing David, the hospice team’s spiritual counselor. She told Marilyn that although she was not a religious person, she enjoyed their wide-ranging discussions, in part because David was an attentive and nonjudgmental listener, and he had a great sense of humor. She told him that she was exploring the possibility of foregoing food and fluid in order to hasten her death and was pleased that he responded as Marilyn had—without shock or dismay, but by asking thoughtful questions.
E.M. told them she had lived a good life, achieved all that she had hoped to accomplish, and was now ready to die—without fear or regret. She concluded that the burdens of living consistently outweighed the benefits. She knew she was dying but was frustrated by the slow pace; she wanted to speed up the process without having to involve her son in her plans. She had heard about the VSED option from other residents who had watched the peaceful death of a resident who suffered from amyotrophic lateral sclerosis. That man began to fast once his symptoms became intolerable; it seemed like a good option for her to investigate. She had questions about the process and particularly wanted to know whether it would be painful, and how long it would take to die. She also wanted to be sure the hospice team would support her decision if she decided to proceed. This was to be the focus of Marilyn’s visit today.
In Marilyn’s previous hospice position in another state, she had worked with several patients who had chosen to forego food and fluid, so she felt well prepared to discuss the pros and cons of this option with E.M., to ensure that she had a realistic understanding of the process and all alternatives and to answer any questions she might have. There was a potential problem. David told Marilyn there might be resistance from other team members or hospice management regarding the choice to fast—particularly as E.M. was not in great pain and not close to death. It was thought she might otherwise live with her disease for months.
As a consequence of these concerns, the question for next week’s team meeting was to discuss whether intentionally hastening death by fasting should be supported as an appropriate (ethical and legal) palliative/hospice option—or whether it would be viewed as an act of suicide that was unethical and illegal to support. Marilyn was very conscious of her current “new employee” status and did not want to create problems for herself or her colleagues. Yet she also felt strongly that hospice patients should have all their questions answered and be helped to make informed decisions that reflected their values and wishes, and they should expect continued palliative support even when their choice was to (legally) hasten their dying.
Marilyn’s meeting with E.M. was productive. She told her that most patients who chose to intentionally fast found the discomfort associated with VSED could be readily managed by good bedside care. Patients require comforting physical support, for example, offering to provide lotion baths and helping with position changes, as well as continuous empathic support for the patient and family members throughout the process. Although few patients complained of hunger or physical pain, the experience of a dry mouth and feeling of thirst commonly occurred and could usually be relieved by good oral care. Depending on the patient’s physical condition and preexisting disease state, death generally occurred within 2 weeks after initiating the fast. The process required a patient who was determined and resolved to hasten dying. Although E.M. was eager to begin, Marilyn recommended that she first discuss her decision with her son and the other members of the hospice team so she would have their support throughout the process.
The next hospice team meeting revealed divergent views about the morality and legality of the VSED option. Whereas some believed that a core principle of hospice care involved supporting autonomous and informed choices that permit patients to die “on their own terms,” others were concerned about the legality of VSED. They wondered whether providing supportive care during this dying process would involve them in assisting a suicide, which was illegal in their state. Still others strongly held that intentionally hastening death was contrary to the hospice philosophy of care and believed E.M. should be told that her plan to hasten/cause death by dehydration could not be supported. At the end of this contentious discussion, it was agreed they needed more information and guidance. They decided the case should be presented to the hospice’s ethics committee, while other members of the hospice team would meet E.M. to further explore her wishes as well as her understanding of consequences and alternatives to her apparent choice. They also wanted to meet with her family to explore her son’s views about her choice.
The next week, a meeting was held with E.M. and her son; Marilyn, the hospice nurse manager, and the social worker were also present. Although E.M. had previously informed her son of her plan to VSED, he expressed dismay and opposition to her choice. He was particularly concerned about the possibility that, as the primary beneficiary of her estate, he would be held legally liable if he supported or encouraged her decision to fast. He thought her choice was illegal and that her caregivers and family had a duty to see that she ate.
The social worker also expressed reservations about E.M.’s choice; she was concerned about the possibility of untreated depression, impulsivity, and suicidal ideation. She thought all potential mental disorders that could compromise decision making should be thoroughly explored. The nurse manager was anxious about the possibility that VSED would be painful and involve months of suffering. She acknowledged that she had never known a patient to make such a choice and wondered whether there were “unmet needs” that, if addressed, would cause E.M. to change her mind about her desire for a hastened death. Marilyn said little, and E.M. seemed quite unmoved by these expressions of concern about the choice she had made.
In their ethical analysis of the hospice role in VSED deaths, the committee considered positions in support and opposition to making this option available to their patients. (A fuller exploration of those positions will be presented in the following discussion.) At the end of their deliberations, they concluded that hospice clinicians could ethically counsel “appropriate” patients about the VSED option and provide support throughout the ensuing dying process. (By appropriate they meant patients who were decisionally capable, experiencing intolerable suffering that could not otherwise be relieved, and who made a voluntary and resolute choice to hasten their dying.) The committee also made specific reference to the organization’s policy regarding conscientious objection, which would provide a mechanism to support clinicians who were morally opposed to supporting patients who chose this option to hasten their dying process. The committee members also noted the absence of written organizational polices and guidelines regarding VSED and recommended that such guidelines be developed.
Meanwhile, E.M. proceeded with her plan to achieve her end-of-life goals. She hired several residential aides who would provide care when she became bedbound. She continued to meet regularly with David and Marilyn. She agreed to be evaluated by an experienced psychologist to ensure that she was not suffering from any affective disorder that could compromise her ability to make an informed decision. She readily passed that assessment. Once it became clear to all members of the hospice team that VSED was a legal option and that E.M. was decisionally capable and suffering in ways she found intolerable, they agreed to provide support to her and her son. He was reassured to learn that his mother was making a legal choice and in time came to understand her reasons for doing so, although he remained sad that she was “choosing” to die sooner than her disease dictated. He began meeting with the social worker for bereavement support.
There is broad agreement about how palliative care clinicians ought to respond to patients who request assistance in dying. They are taught to systematically explore the reasons behind the request, to identify and intensify efforts to relieve pain and suffering, to consult specialists in the relief of psychological or spiritual anguish as needed, and to commit to nonabandonment and the identification of mutually acceptable solutions to the patient’s suffering.[4–6] When unacceptable suffering persists despite all efforts, most palliative care clinicians agree that decisionally capable patients who request assistance in dying should be informed about all legal options that permit a hastened death.[2,4,6] Those options include forgoing or withdrawing life-sustaining interventions, VSED, and sedation to unconsciousness for relief of intractable suffering.[2,7]
In most cases when hospice patients request assistance in dying, the underlying source(s) of suffering that prompts the request can be ameliorated by the provision of comprehensive palliative care. When suffering cannot be relieved in a manner that is satisfactory to the patient, the option to VSED as a means to shorten life may present a welcome strategy. It remains the case that few of those who are informed of this option decide to pursue it. Sometimes, the patient’s request for assistance seems more a momentary or fleeting wish for death and does not proceed to the level of enduring and determined desire necessary to intentionally hasten dying. In other cases, the patient’s knowledge that he/she has “a way out” seems to provide relief from feelings of desperation and entrapment. Patients’ awareness of their continuing ability to control this important aspect of life can in itself be therapeutic.
More than a decade ago, when palliative care clinicians first began discussing VSED as one of the “palliative options of last resort,” they acknowledged that the legal precedents guiding this option were less developed than those supporting the refusal of other life sustaining interventions such as ventilators and feeding tubes. However, in the intervening years, a growing number of legal scholars and palliative care clinicians have concluded that VSED is a legally acceptable option.[1,4,9] Yet, even when clinicians agree about the legality of this option, questions may persist for some providers about the morality and professional advisability of supporting the practice. Clinicians’ concerns about this option may arise from a number of sources.
When a terminally ill patient chooses to forgo further use of life-sustaining interventions in order to hasten or cause death, there is a legal and ethical consensus regarding the cause of death. It is agreed that the underlying disease that necessitated use of the life-sustaining measure causes death, not the decision and subsequent removal of the life-sustaining intervention. Discontinuing unwanted treatment allows the patient to die “naturally” of the underlying disease; such decisions are routinely made by terminally ill patients and/or their families and are supported by hospice and palliative care clinicians.
However, when a patient chooses to forgo food and fluid, some argue that the patient has introduced the cause of death—specifically, dehydration—and such a choice may seem closer to an unethical act of suicide. Some clinicians believe that any act that intentionally hastens or causes death is always morally wrong, even when taken to escape intolerable suffering.[10,11] Those holding this view may also believe that informing a patient of the VSED option would also be morally wrong because by doing so the clinician might influence the patient to choose this immoral option, and providing this information would be condoning and cooperating in wrongdoing.
It is established professional practice that clinicians are not required to act against their own strongly held moral or religious beliefs, yet it is also the case that health care professionals are obliged to inform their patients about all legally available treatment options. In the face of such moral conflict, a clinician who is morally opposed to a particular practice is expected to refer the patient to another who will provide information and support for all legal medical options before withdrawing from the case.
Other clinicians who have not witnessed a VSED death may fear that if they inform an already suffering patient about this option, they might indirectly encourage a dying process that is unduly painful, prolonged, and “inhumane.” Such fears are not supported by clinical reality. Several small empirical studies and an increasing number of anecdotal reports suggest that VSED provides most patients with a peaceful and gentle death that is generally well tolerated and occurs within 2 weeks of beginning the fast.[8,9]
Additional Clinician Responses
When hospice patients ask their professional caregivers for help in hastening death, clinicians often experience a “storm” of emotions that may include guilt, shock, self-doubt, failure, sadness, and self-blame. Such feelings may influence the clinician’s response to the request and adversely influence the patient’s care. When hospice patients specifically ask their nurse or social worker to help them die sooner, some clinicians may feel they have failed their patient by not adequately managing their symptoms of suffering. Hospice clinicians rightly view themselves as experts in symptom management—throughout the whole of the dying process. The clinical goal is to help the patient experience a “good” death that occurs naturally. When patients ask for information and/or support for hastening death, some simply say, “I can’t help you with that,”which effectively stops further communication and eliminates an important opportunity for the nurse to acknowledge the patient’s distress, explore the meaning of the desire for a hastened death, and refocus efforts to relieve his/her suffering. Some of the reluctance to enter into an exploration of the request may be driven by fear and misunderstanding about whether legal or ethical liability attaches to a discussion about options that permit patient-controlled dying.
The Patient’s Perspective
Patients who live with an incurable and progressive disease often have to accept many losses. Their lives may be filled with pain, physical limitations, dependency on others, and a decreasing ability to engage in activities that once were a source of joy and satisfaction. Some people can accept such limitations with grace and good will, but for others, the inability to have a voice that is heard or to make a choice about dying that is respected is an intolerable affront to their personhood. Many in this group want to know that there are still options and choices available to them during this time. Only the person living with the terminal illness can know when the burdens outweigh the benefits of continuing to live, when suffering becomes unbearable, and when the time has arrived to explore whether and how to hasten dying.
The Ethics Committee’s Deliberations
The ethics committee was composed of approximately 20 persons with a variety of professional backgrounds including advanced practice and registered nurses, physicians, chaplains, administrators, attorneys, social workers, and a philosopher/bioethicist. After thoroughly reviewing the available literature (and there was not a great deal of material), they invited clinical experts with VSED experience to present their views to the committee. Marilyn was one of the experts invited to address the committee. The committee considered ethical positions in support and opposition to including VSED as a sanctioned option within the hospice organization.
Ethical Support for VSED
The hospice philosophy of care emphasizes patient- and family-centered care that seeks to optimize quality of life by preventing and treating suffering throughout the whole of the dying process, while facilitating patient autonomy, access to information, and personal choice. Consistent with this philosophy is the duty to relieve suffering, which is understood to include threats to personal integrity and wholeness and loss of control and dignity.
Ethical Concerns About VSED
It was noted that another traditional hospice value was the commitment to neither hasten nor prolong dying. Thus, participating in support of an act to intentionally hasten death could be viewed as inconsistent with the value that supports finding and creating meaning during all phases of the dying process. Similarly, questions of proportionality could be raised when relief of suffering occurs at the expense of shortening the dying process. Some members of the ethics committee continued to be concerned about the possibility that dying of dehydration would involve an intolerable amount of suffering; they feared that discussing this option with already suffering patients and families might seem contrary to their obligation to relieve suffering and not cause more suffering.
The ethics committee members also acknowledged that when family members or clinicians disagreed with a VSED decision, the experience of watching the patient die in this manner could be a source of significant suffering for those family members and/or clinicians. Thus, if VSED was chosen, patients and families would need ongoing emotional, spiritual, and physical support throughout the dying process, and clinicians might also need such support from colleagues. This hospice had a conscientious objection policy that identified and supported a process for those with moral objections to VSED to withdraw from the patient’s team, while another clinician without such objections would join to provide ongoing support.
Other aspects of E.M.’s case were examined for their ethical relevance—for example, the fact that she was neither imminently dying nor suffering unmanaged physical pain was considered. They noted that in Quill and Byock’s guidelines for VSED, the prognosis for death was “weeks to months,” and patient characteristics included “persistent, unrelenting, otherwise unrelievable symptoms that are unacceptable to the patient….”[3(p414)] These experts noted that when the patient was not imminently dying, clinicians should seek a second opinion from specialists skilled in the assessment of depression and spiritual suffering who could facilitate the clarification of motives and alternatives with the patient, family, and professional caregivers. The committee believed that such considerations ought to be included in the development of written guidelines and procedures regarding VSED for the hospice.
Conclusions of the Ethics Committee. After considering the prospective benefits and concerns about informing patients about this option, the committee concluded that, on balance, providing comprehensive information about VSED permits a patient to make an informed decision that reflects their personal values and wishes. The decision to stop eating and drinking was thought to be consistent with the ethical and legal right to forego unwanted life-prolonging measures.[2,3] And finally, it was thought that educating patients and families about “what to expect” as VSED progresses, providing support as the patient dies, and providing the family with bereavement care after death were actions consistent with the hospice value of patient- and family-centered care.
Increasing numbers of patients across the country are exploring and sometimes choosing VSED to escape intolerable suffering. A growing number of hospices, in noting this change, are recognizing the need for written policies and procedures to guide clinicians’ responses to such requests. Although it is likely that not all hospices will choose to sanction this option within their organizations, having a clear written policy will enable clinicians to respond in a cohesive fashion to patient requests for this information. As more stories of family experiences following a loved one’s choice to VSED are published in professional and lay journals, future hospice patients may wish to know whether their local hospice has a VSED policy in order to make an informed choice about whether to begin a relationship with a particular hospice. Although VSED will not be an appropriate option for all hospice patients, given the opportunity to consider this option in discussions with family members and caregivers, some hospice patients may feel empowered by the knowledge that they can, if they choose, indirectly control the timing of death.
In the present case, E.M. was able to proceed with her plan to hasten her death despite the initial reservations by some members of her hospice team and her son. Once they recognized that she had made a well-informed and determined decision to proceed, and they understood they would assume no legal risk in supporting her choice, her death was peaceful and dignified, and the process was instructive for all those involved.
Fasting: A Peaceful Way to Avoid a Prolonged Dying with Pain and Suffering
Stanley Terman MD explains symptoms of total fast; YouTube video – 25 mins
Summary. Dr Terman has been a determined advocate for educating the public and his profession of physician caregivers about the particulars of VSED or the Total Fast. In this video he is interviewed while he is personally experiencing the first 3 days of VSED. For those who find the idea of a fast beyond imagining for themselves, this video may be a persuasive way to make the case that the first few days of fasting are not painful or extreme in their symptoms. As a psychiatrist, it would appear that Dr Terman is convinced that the mental image of VSED has been unfairly appropriated by societal phobias and that exaggerated fears have created a mental block to the objective assessment of the actual experience of patients, and nurse-caregivers and family-caregivers who have actually shared the VSED end-of-life experience. No endorsement of this personal account by Dr Terman is intended but it remains a useful source of information for many who would like to understand the actual VSED experience.
VSED 2017 Regional Conference discusses the considerations and implications of the decision to pursue VSED
Guide for the VSED At-Home Family Caregiver
This twenty-page booklet is being produced for the VSED 2017 Conference and will be distributed to each registrant at the conference.
The Decline of Tube Feeding for Dementia Patients
Paula Span NYTimes August 2016
She could still respond to music, if a helper wheeled her to the Sunday concert at the Hebrew Rehabilitation Center in Boston, but she spent most of her time in bed. Sometimes she recognized family members; often she didn’t. She couldn’t say more than a few words. She had trouble swallowing.
Last year, her doctor pointed out that she was losing weight and that a feeding tube, surgically inserted through her abdominal wall, might help her regain a few pounds.
Her son James, who served as her surrogate decision maker, responded the way a growing number of family members do: He said no. The proportion of nursing home residents with advanced dementia who receive a feeding tube has dropped more than 50 percent, a new national study has found.
The researchers, analyzing federal nursing home data, reported that in 2000, nearly 12 percent of patients with this terminal condition had feeding tubes inserted within a year of developing eating problems. By 2014, the rate had fallen to less than 6percent.
“It’s getting much less controversial” to decline a tube and rely on hand feeding, said Dr. Susan Mitchell, a geriatrician and senior scientist at the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research. “This is becoming the prevailing wisdom.”
Dr. Mitchell has had a lot to do with that shift. As a young physician training in nursing homes, she wondered whether feeding tubes actually helped these bedbound elders. At the time, roughly a third of cognitively impaired nursing home residents were tube-fed.
She and a cadre of researchers, primarily from Harvard and Brown universities, have been methodically reporting their findings for 20 years, demonstrating in one article after another the drawbacks of artificial feeding for people in the final stages of dementia.
Change can come slowly in medicine, but it does come. In 2013, the American Geriatrics Society updated its recommendations against feeding tubes for older patients with advanced dementia. The Choosing Wisely campaign, which publishes lists of procedures and tests that patients and families should question, and the Alzheimer’s Association have taken similar positions.
Now, families and physicians seem to have gotten the sorrowful message: Dementia is a terminal disease. Eating and swallowing problems eventually plague almost everyone who has it. Feeding tubes don’t help. In fact, they can make matters worse.
Consider, first, how ill these patients are. Advanced dementia, as Dr. Mitchell and her colleagues define it, brings such profound memory loss that people don’t recognize family. They can’t speak more than five words. They’re incontinent. Sometimes they can’t turn over in bed unaided. “They’re dependent on others for all their day-to-day functions,” Dr. Mitchell said.
Even if an aide or relative patiently feeds them, “they may not know what to do with the food in their mouths.” When they try to swallow, they can aspirate food particles into their lungs and develop pneumonia. “For most people, that’s a very poor quality of life,” Dr. Mitchell said.
Feeding is such a primal activity, the first thing we do when someone is born and one of the last sources of pleasure as death approaches. Naturally, families can find it difficult to refuse a fairly minor surgical procedure that provides nutrition.
But a person no longer able to understand why a gastroenterologist is opening a small hole in her belly may find the insertion of a tube confusing and traumatic. The mush that flows through eliminates the taste of food and the social interaction of hand feeding.
Almost 20 percent of the time, the tube is blocked or dislodged within a year, requiring hospitalization. Dementia patients may also try to pull it out, leading to physical or chemical restraints (read: drugs).
Feeding tubes are also associated with an increased risk of pressure ulcers or bedsores, perhaps because they encourage inactivity or cause diarrhea; the ulcers heal more slowly than in people without tubes.
Perhaps the trade-off would be worth it to some families (since these patients can no longer make decisions themselves) if a feeding tube prolonged life. For others, that would be a good reason to refuse one.
As it turns out, though, feeding tubes don’t keep advanced dementia patients alive longer. Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington who has often collaborated with Dr. Mitchell, show that they make no significant difference. After receiving a feeding tube, patients with advanced dementia lived a median of 165 days, and two-thirds died within a year.
Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don’t offer enough information to help them decide. Stark racial differences persist: 3 percent of white nursing home residents with dementia had feeding tubes inserted in 2014, compared with 17.5 percent of black residents.
Feeding tubes remain more popular in certain kinds of nursing homes, too. For-profit nursing homes use them more than nonprofits, Dr. Mitchell’s research has shown, and bigger facilities more than small ones. In New England, fewer than 2 percent of residents are tube-fed. In parts of the South, the rate can run up to 10 times higher.
If you see such practices as indicators of a more aggressive approach to end-of-life care in general (Dr. Mitchell does), then you wonder if health care professionals spend more time talking to white families about their options. You wonder if higherMedicare reimbursement for tube-fed patients (and the labor costs of hand feeding) make nursing homes more apt to recommend tubes.
But more and more, you encounter people like the Jewells.
Joan Jewell had worked as a nurse in upstate New York and had cared for her husband as he died of Alzheimer’s disease. James Jewell, whom she encouraged to study medicine, is an internist at the nursing home where she lived.
Years before, when his mother could still contemplate such matters, “we had the what-if discussions,” Dr. Jewell told me.
Mrs. Jewell was clear. “She subscribed to the idea that quality of life was more important than being kept alive at all costs,” her son said. “And being able to do things for herself was part of her definition of quality of life.”
Despite her weight loss, then, he declined medical intervention. In February, Mrs. Jewell began refusing food altogether and soon slipped into a coma. Dr. Jewell and his children were with her when she died, at 89.
Narrative Inquiry in Bioethics, 2016, Johns Hopkins University Press
‘I’d Like to Choose my Own Way:’ VSED in the Non–Terminal Patient
Adam Marks, MD
In my palliative care clinic, I see a variety of patients and families who are faced with a life–limiting illness, and the bulk of my interaction has to do with symptom management and/or counseling around goals of care. So when a patient showed up on my schedule with the stated purpose to review advance care planning, it seemed a straightforward case. My fellow reviewed the patient’s past medical history and other relevant details (recent small stroke without residual deficits, otherwise a relatively healthy 78–year–old man) and then went into the exam room to begin the patient interview. A short while later, my fellow came out with a frown, saying “He wants to die, and he’d like our help.”
Request for a hastened end of life among the terminally ill isn’t new. Much has been written about how a conscientious and empathetic provider can explore the reasons behind such requests, to uncover the suffering (physical, spiritual, emotional) that underlies a desire to end one’s life. But this patient was different. As my social worker and I joined my fellow in the exam room, we elicited more of his story. He was an otherwise healthy, physically active older man who still worked in a consulting firm that he founded. Aside from a minor stroke and mild hypertension, he was without serious illness. He’d had a hip replaced last year, which he had tolerated well. He traveled, and enjoyed time with his children and grandchildren. Having borne witness, however, to the death of others including his first wife, he wanted to avoid the debility and loss of dignity that often preceded death, and wished to end his life “on [his] own terms.” This was not a new plan; indeed, he had researched legally acceptable means of ending one’s life for the past eight years, and was very knowledgeable about the legal precedents recently–passed physician assisted suicide. He informed us, then, of [End Page 90] his plan to stop eating and drinking to bring about his own death, and asked if we could help guide him through this process and maintain his comfort while he approached his end of life.
Our conversation continued. Was he experiencing any debilitating physical symptoms? Aside from some mild joint pain, no. He continued to exercise at least sixty minutes day and enjoyed bike riding with his second wife. Was he depressed? He didn’t appear to be, and scored very low on the geriatric depression screening scale. Was there any spiritual distress? This he denied; though he had been raised Jewish, he was a self–described atheist and denied any spiritual concerns. Did he understand that he very likely had years left of a life of health and functional independence? Yes, he recognized that he likely did, but his recent small stroke had raised the specter of a slow but progressive and irreversible decline that he had feared for most of his adult life. He felt he had lived a long, productive and meaningful life, and wished to die “on a high note.” Had he informed his family (three grown children, second wife) about his plans? They knew in general what his wishes were, but he hadn’t yet told them that he was planning to move forward with his plan to stop eating and drinking, which he planned to implement in several months time.
My social worker asked more about what his past experience with death had been like. He discussed at length watching his father die in a nursing home some 20 years ago, and how for the years preceeding his death, his father hadn’t been able to care for himself or even recognize the people around him. He spoke, too, of his wife’s death a few years later from breast cancer. She had been on hospice, and despite this he identified that her final weeks and months of life were characterized by suffering and indignity. These experiences strongly shaped his desire to avoid such an approach to death and to maintain a certain amount of control...
website posted info – http://www.phyllisshacter.com
Our Medical Preparations for VSED
I focus here on VSED because that is what I know so intimately. A person must be mentally competent in order to VSED. Otherwise, he/she will not remember why they are not eating and drinking.
2.Talk with your doctor about your wishes as early as possible.
If you think that VSED could be a choice for you in the future, whether you are healthy now or not, let your doctor know about this possibility. Put this information in your Health Directive. Find out if your doctor will support you through this process. Would he/she make a house call if necessary? Will he/she be easily available by phone 24 hours per day? If your doctor will not support you, you may want to consider finding a different doctor who will be supportive. I discoverd that many hospices will not support VSED for people with neurological diseases unless they have a six-month terminal diagnosis. A person with Alzheimer’s (and some other neurological diseases) will no longer be mentally competent if he/she waits to VSED until they are within the last six months of life. Thus, end-of-life medical support from another medical professional, such as a doctor or nurse practitioner, is essential.
3.Complete necessary legal paperwork.
Health Directives: For years, Alan and I had our notarized Health Directives in place. We would review our Health Directives every year or two and update them. After Alan healed naturally from laryngeal cancer, the Alzheimer’s Disease got worse. He was clear that he did not want to be treated for any acute disease as a means to prolong his life, even a simple bladder infection or flu. This information was included in his Health Directive.
If a person is in the early stages of dementia/Alzheimer’s, it’s very helpful if he/she completes the Alzheimer’s Disease/ Dementia Mental Health Advance Directive. It is on the End of Life Washington website. This form is recognized under Washington state law, but it may or may not be recognized in your state. The form offers an important way to think through your wishes and to record them. Bear in mind that the form has to be completed and witnessed and notarized while the person is mentally competent, and preferably in the presence of an attorney. There are some sections in this Directive that require legal guidance. It is important to address this as the first obvious signs of dementia become apparent and before competency is lost. Some people who have no dementia diagnosis and no family history of Alzheimer’s even choose to fill out this Directive when they are healthy. Click to see Robb Miller’s discussion about the End of Life Washington Health Directive and Alzheimer’s Disease and Dementia Mental Health Advance Directive.
When Alan was diagnosed with both laryngeal cancer and Alzheimer’s, we had his doctor complete a POLST form for him. POLST is an acronym for Physician’s Orders for Life Sustaining Treatment.
POLST: When Alan was diagnosed with both laryngeal cancer and Alzheimer’s, we had his doctor complete a POLST form for him. POLST is an acronym for Physician’s Orders for Life Sustaining Treatment. It is a form that is offered in Washington as well as other states. The Washington form is neon green and printed on heavy stock that is posted in a prominent place in the home, most often on the refrigerator. The form allows an individual with a serious illness or fragility to summarize their wishes regarding life-sustaining treatment. Emergency personnel, responding to a home, are trained to look for the bright green form and to respect the treatment decisions outlined on it. If the form indicates, “do not resuscitate”, emergency personnel can respect that without concern for repercussions. To be legal the form must be signed by both the doctor and the patient.
4.Check with your local hospice.
Our local hospice in Whatcom County said they would not accept Alan as a patient until he was in the end stage of coma. There are some hospices that will support the VSED process. Contact your local hospice and find out. Also, call your Compassion & Choices office in your area, and ask them for guidance and referrals. Compassion & Choices may be able to give you names of medical doctors or hospices that are willing to support someone through VSED. If your state does not have a Compassion & Choices office, call the office of the National Compassion & Choices. It is essential to have proper medical support throughout the VSED process.
It appears that there is no standardized response yet from hospice regarding someone who wants to VSED.
It appears that there is no standardized response yet from hospice regarding someone who wants to VSED. Some hospices will accept such a person, and others will not. Some will accept a VSED patient on the second day of the fast. Hospices that have affiliation with religious organizations, may have restrictions. A person, who is going to VSED, requires adequate professional medical support so he/she does not suffer.
5.The realities of the VSED process:
Before the VSED process begins, a care giver needs to get all the necessary supplies together. This will support the patient through the VSED process.
Five days prior to starting the VSED process, Alan reduced his calorie intake to about 500 calories per day. I believe this helped to speed up the VSED process. His body was healthy, and he wanted to die and go through the VSED process as quickly as possible. The key to dying more quickly is for the person to not have any food or water even if this is challenging to the person’s loved one. Sometimes this protocol is difficult for the caregivers. Some family members or caregivers feel they are providing extra comfort to the patient if they give him/her small sips of water occasionally. This actually prolongs the process. A person can go without food for quite a while, but that is not the case with the withdrawal of water. The person dies mostly from the dehydration process. If a person is very overweight, it may take him/her longer to VSED. You can discuss this issue with your doctor.
I gave strict instructions to the caregivers that I was the only person who could talk with Alan if he asked for food or water. On the fifth day, he asked me twice. Both times I reminded him why he wasn’t eating or drinking. I explained that drinking water would prolong the process. Then I said to him, “Would you like me to give you a glass of water, or would it be okay if I spray mists of water into your mouth until you are satisfied?” Both times he said the mists of water was okay. After I had explained to Alan why he wasn’t eating and drinking, if he had still asked for water, I would have, of course, given it to him.
6.Death Doulas and Death Midwives are additional resources.
There is a growing movement of death doulas or death midwives. These people give guidance in preparing for and following the death. Do some online research. They may have a medical professional who works with them who can administer care and medication.
7.Caregivers are necessary.
To help care for Alan, I hired two Certified Nursing Assistant caregivers on twelve-hour shifts. Even if Alan had been on hospice at home, I felt we still needed two caregivers in order to have excellent round-the-clock care. I found them myself through personal networking. However, many people will prefer to call a certified care giving agency who have care givers who work for them. Some people will not be able to afford the cost of extra care giving help. It’s possible that care givers could then be hired for just the latter days of the VSED process, or friends and/or family could step in to help. Whether or not your loved one is in hospice, you can contact them and ask if they have a list of private caregivers who are experienced in end-of-life care. In addition to taking good physical care of the person who is dying, the caregivers are eyes and ears for the doctor. Good medical support and care giving support is essential to have a good VSED process.
Based on my experience, it’s necessary to also have twenty-four hour caregiving support. This can also be done by family and friends. However, since they are not trained professionally for end of life care, they need to get some training, somewhere so they know what to do. They are certain considerations, such as: how to turn a person in bed; how to apply an adult diaper; how to give a suppository; how to prevent bedsores, how to keep the face moistened, how to bath the body, and more.
Most caregivers are trained to help people prolong and support life rather than support an “elective” death.
8.Caregivers must be supportive of VSED.
Most caregivers are trained to help people prolong and support life rather than support an “elective” death. Taking care of someone who is going to VSED is operating in another paradigm. In this case, the caregiver has to be supportive and respectful of the patient’s and family’s choice while giving good physical care. If the caregiver is against the concept of VSED, he/she should not be hired. Some caregivers’ religious beliefs may preclude them from being supportive. The caregiver also has to adhere to the boundaries set by the patient’s advocate.
9. Visit a dementia facility.
As part of the decision making process, you and your loved one may want to visit one or two dementia facilities. Make sure that your tour of the facility includes seeing the Alzheimer’s patients who are in the last stages of Alzheimer’s, in the last eighteen to twenty-four months of life. I recommend that you do some research about the seven stages of Alzheimer’s. Click to see a video from Tresa Mariotto – Executive Director of Woodway Assisted Living in Bellingham – on her experience working with dementia and Alzheimer’s patients.
10.VSED in a dementia facility:
Dr. Stan Terman (www.caringadvocates.org), has a team of people who help prepare Living Wills that state that if a person develops dementia in the future, and gets to the point of no longer being able to feed him/herself, then that person’s agent can be designated to request that the patient no longer be fed or given liquids. This Living Will is executed while the person is still mentally competent. The Living Will can state that food be put near the person. Because the person is incapacitated to feed themselves, their death will effectively be hastened. Due to the fear of legal charges of neglect, most facilities will not do this at this time. If you were to execute this kind of Living Will and your loved one is no longer mentally competent, make certain that the facility would be willing to respect your wishes.
11.A supportive physician is essential.
The relationship between a patient and a doctor or nurse practitioner is very important. The key to success in using VSED is having a supportive physician or nurse practitioner who is willing to prescribe medications to lessen anxiety and discomfort as the body begins to shut down. It is ideal if the physician or nurse practitioner is not at all hesitant about prescribing sufficient medication to sedate the patient if requested and desired. This is important information that should be discussed prior to starting the VSED process.
It is important to have a doctor you are comfortable with, and it is important to take the initiative in every appointment over the year(s) to express your views. This helps your doctor know that your decision is one that has been carefully considered over time. It is important to ask the doctor directly if they would support you in the event that you ever made a decision to VSED. If you find, in early conversations, that the doctor will not be supportive, it is best to try to re-establish a relationship with one who would.
Alan had been seeing a wonderful doctor of osteopathy for a few years. We developed a comfortable, mutually respectful relationship with her. Alan had talked with our doctor for many months about his thoughts about VSED. He often asked her questions about what would physically happen to him during the VSED process. Our doctor knew how important this choice was to Alan, and she also knew that he was still mentally competent.
When I called her and told her what hospice had said, she immediately replied, “Then I’m going to take care of Alan.” She made three house calls during the 9 ½ days of his dying process, and she was on twenty-four hour call. There were times when we had to call her in the middle of the night.
My husband wanted to have as conscious a death as possible. He did not want to suffer physically, and he only wanted the necessary medication to keep him from suffering. He only had small amounts of medication for the first several days. As he got more dehydrated and his body began to shut down, the doctor stayed one step ahead of him and made sure that he was kept comfortable with the proper medication.
Before the VSED process began, one of the experienced care givers got all the supplies together that would be necessary to keep Alan comfortable. Please see the list of care giving supplies on this page.
In another section of this website, “Alan’s transition, 9 ½ days,”, I have given detailed information about what happened to him as he progressed during the VSED process. This is important information.
12. Who cares for the primary caregiver?
I also had to think about emotional support for myself. For support, I asked a friend to come and stay with me at the house during Alan’s dying process. Her focus was noticing my emotional needs and taking care of me. This was a very difficult time for me. I was losing my best friend. I was anxious. I was exhausted. After Alan died, I grieved for a long time. See section on “My Journey Through Grief.”