Voluntarily Stopping Eating and Drinking: A Practical Approach for Long-Term Care Facilities

Case

Mr. S was a 73-year-old man with non-small cell lung carcinoma metastatic to bone. His bone metastases were irradiated but he refused other anticancer treatments. He wished to focus exclusively on comfort goals, feeling that he had lived a full life and that his current quality of life was poor and not worth living. He denied uncontrolled physical, emotional, or spiritual pain. He wanted his life to be over but denied wanting to harm himself. Depression screening was negative, and he was thought to have full decision-making capacity. His care needs exceeded what his family could provide, so arrangements were made for care in a skilled nursing facility (SNF).

At the SNF, his functional status stabilized. He repeatedly expressed frustration that he had not died yet. He inquired about medical assistance in dying, which was not legally available in his jurisdiction. After interdisciplinary evaluation, including medical, social work, psychology, and spiritual assessments and interventions, his desire for hastened death persisted. Because of his persistent suffering, the options of voluntarily stopping eating and drinking (VSED) in addition to usual hospice care were discussed in detail with him and his family. He was told that dying by VSED might take one to three weeks but could be longer if he continued to consume even small amounts of fluids.

Mr. S elected to begin VSED. Initially his sister (his closest living relative) wanted him to be pushed to consume food and fluids, but after a family conference she agreed to support his decision. It was agreed that staff would offer food or drink at usual meal times or by resident request, but family and staff would not encourage oral intake beyond providing any assistance he requested. Plans were made to manage dry mouth, oral hygiene, delirium, and personal care. A staff meeting was convened to address any concerns before proceeding. Front-line caregivers could opt out but none did so, and no moral distress or conscientious objections were expressed.

After beginning VSED Mr. S consistently refused to eat but continued to take small sips of water every day. With review and troubleshooting of the challenges of this case, staff became more skilled in determining whether he really wanted fluids or whether alternatives such as oral care were indicated. His main complaint during VSED was dry mouth, which was managed with moistened oral swabs and a xylitol-based saliva stimulant. No pain, dyspnea, or agitation occurred during VSED. He expressed no further frustration at how long it was taking to die. By day 17 of VSED he became less arousable and stopped drinking fluids, and he became unresponsive to voice by day 19. He died peacefully on day 22.

Introduction

Personalized comfort-focused care can do much to relieve suffering and promote quality of life near the end of life, yet, some patients continue to suffer. ¹ Some patients facing terminal or serious degenerative illnesses seek medical assistance to hasten death rather than face continued physical, emotional, and spiritual suffering; and loss of independence, dignity, and control.^1–6 Physician-assisted dying (PAD, defined as “a physician providing, at the patient's request, a prescription for a lethal dose of medication that the patient can self-administer by ingestion, with the explicit intention of ending life” ⁷ ) is legally unavailable to most of these patients, and VSED (a deliberate, voluntary attempt to hasten death in the setting of prolonged dying or refractory suffering that a person finds intolerable) has been suggested as an appropriate last-resort alternative in some cases.^1,8,9

VSED is distinct from the loss of appetite or interest in eating or drinking that often occurs late in many illnesses. While VSED is objectionable to some patients, others with fatal and severe degenerative disorders turn to VSED as a relatively quick and peaceful way to hasten death without mandatory involvement of medical personnel. ⁸

Despite longstanding calls for further studies,^5,10 little research has been performed to clarify (among other issues) the prevalence of VSED as a mode of dying, reasons underlying patients' choice to VSED, characteristics of patients choosing VSED, and predictors of “good” and “bad” deaths in patients who VSED; detailed standards and guidelines remain unavailable. This article draws upon the available literature and the experience of VSED in one long-term care (LTC) facility to describe issues specific to VSED in institutional settings and offers recommendations for LTC facility providers, administrators, and staff. To the author's knowledge, no such article has yet been published in the medical literature.

Resident, Family, and Clinician Perspectives

Several case series of people undergoing VSED have been published in the literature.^5,6,11 Two series from the Netherlands included a substantial proportion of LTC facility residents^6,11 (41–47%), whereas in a series from Oregon, it is unclear whether LTC facility residents were included. ⁵ Common reasons patients cited for wanting to hasten their death included somatic symptoms, existential concerns, including seeing continued existence as pointless, dependence on others, readiness to die, and poor quality of life.^5,6

Even when PAD is legally available, many patients wishing to hasten death appear to prefer death by VSED rather than PAD,^5,6 possibly due to the opportunity to reconsider the decision; interact with family, reflect, and grieve; and pursue hastened death without reliance on physicians. ⁴

Other patients may find PAD morally objectionable even where legal, but may find VSED morally acceptable. Furthermore, by contrast to PAD or refusal/cessation of life-sustaining treatments (LST), VSED may be perceived as advantageous in that it does not require an imminently lethal diagnosis, and it is accessible in jurisdictions where PAD is not legally sanctioned. ² Consistent with other reports, in the author's experience some LTC facility residents with apparently intractable suffering from terminal or severe debilitating illnesses experience improved quality of life and satisfaction with care once they know VSED is available to them^4,12; and as with PAD, some never exercise the option to hasten their deaths. ¹³

In some cases, family members have the resources and desire to care for a loved one undergoing VSED at home, which can be a meaningful process for patients and family caregivers with opportunities to share stories, reminisce, and say goodbyes.^1,14 Whether at home or in institutional settings, family caregivers need information on preparing for VSED such as ensuring adequate support for basic physical caregiving, including bathing and toileting; managing common symptoms, and responding to patient requests to resume oral intake. ¹⁵ In other situations, families may not support a patient's request for hastened death or are (as in Mr. S's case) unable or unwilling to provide hands-on care during VSED. In these cases, receiving facility-based care during VSED versus continuing “standard” comfort-focused care may be the only options.

Healthcare workers may perceive VSED as a more natural process than PAD, involving less emotional burden for families and professional caregivers than PAD. In a survey of Oregon hospice nurses and social workers, most subjects perceived VSED as “letting go of life,” whereas PAD was described as a more active process of hastening death. ¹⁶ Hospice workers generally supported patients' choice of VSED, while only 2.6% described VSED as “immoral.” ¹⁷ More than three-fourths of subjects felt that VSED should be available to relieve physical, psychological, or spiritual suffering near the end of life, and 70% would consider VSED for themselves if terminally ill. ¹⁷ VSED remains ethically controversial and it is uncertain how widely accepted VSED is in jurisdictions where PAD is illegal, or by nonhospice health professionals. ⁹

Hospice workers and family physicians generally describe VSED as relatively comfortable and peaceful with a short survival time in older, terminally ill patients.^5,6,18 However, severe thirst, agitated delirium, and a prolonged dying phase occur in some patients.^1,6 Based on these and other concerns, some commentators caution that even though patients can pursue VSED without formal medical involvement, adequate assessment before VSED and availability of intensive symptom palliation during VSED is essential.^9,18,19

Potential Barriers to VSED in Institutional Settings

Many LTC facilities have implemented culture change interventions to offer residents choices and autonomy in decisions personally affecting them. ²⁰ Recent findings suggest that resident satisfaction with care is associated not only with the offering of choices but also the ability to choose from options residents find satisfactory. ²¹ For some residents with intolerable suffering or unacceptably prolonged dying from lethal or severely debilitating chronic illnesses, VSED may be the only acceptable option.

In some LTC facilities, including the one where Mr. S resided, considerable expertise and experience in managing resident requests for hastened death is available. In Mr. S's facility, culture change, including resident-directed end-of-life care has long been embraced as part of the facility's mission. Facility staff have cared for residents undergoing palliative sedation and VSED, and requests for hastened death are viewed as opportunities to explore resident concerns and identify ways to relieve suffering. Care planning for residents similar to Mr. S includes input from nurses, aides, and other front-line staff; with opportunities to raise staff concerns and to opt out of participation.

Whether the person resides at home or in an institution, extensive caregiver involvement and support is essential for a VSED plan to be enacted. Residents of some LTC facilities who wish to VSED may encounter institutional barriers to their requests. Some LTC facilities such as those with a Catholic or other religious affiliation may have difficulty supporting VSED. LTC facility administrators and clinical leaders may perceive that cooperating with requests for VSED places them at risk for a survey citation, for accusations of abuse and neglect, and for triggering mandatory reporting of suicidal intent.

In SNF settings, the care planning process involves mandatory use of the Resident Assessment Instrument (RAI)/Minimum Data Set (MDS). ²² The RAI/MDS guides care planning with the goals of (among other things) maintaining stable body weight and functionality and if that is not possible, maximizing function and quality of life in the face of expected deterioration. Failure to document the reasons for weight loss, declining function, and other clinical outcomes that may manifest during VSED (e.g., delirium, pain) may trigger quality of care concerns in SNF or other LTC settings, although Centers for Medicare & Medicaid Services (CMS) guidelines specify that it is “withholding nutrition and hydration without advance directive” (italics added) that triggers these concerns.^23,24

Resident safety and protection from harm are appropriately key priorities for LTC facilities. Furthermore, facility staff and providers should not be required to participate in practices that hasten death if they have personal moral objections. ²⁵ In fact, some providers may consider VSED to be a form of suicide and may object to informing patients with intractable suffering near the end of life that the option of VSED exists.^9,25 However, to promote resident autonomy, self-determination, and quality of life,^20,26 facilities and providers must also inform residents of all available legal options and must transfer care to another provider or care setting if the resident continues to request a hastened death intervention that is unacceptable to the facility. ¹⁹

Even for providers without moral objections to VSED, it may be challenging to determine which residents to inform of the VSED option, and when to inform them. As a general guide, residents who request hastened death should receive a comprehensive effort to address underlying causes of suffering and to confirm decision-making capacity before being informed of the option of VSED. Furthermore, discussion of VSED is appropriate only for residents who wish to hasten their death, or who specifically request to VSED.

This approach helps to ensure that a resident does not resort to VSED as an escape from undertreated pain or depression, for example. An independent second opinion from a consultant with expertise in palliative care is indicated to assess the situation and to advise regarding an appropriate response, especially when LTC facilities lack experience and expertise in responding to resident requests for hastened death.

Professional healthcare organizations are beginning to recognize that patients with decision-making capacity who are near the end of life have the right to VSED as a means to hasten their death. ²⁷ However, the right of competent, terminally ill patients to choose VSED to hasten their deaths has not been adjudicated by a higher court in the United States as of this writing.

Two lower court cases in New York State involved requests from SNFs to force older debilitated residents to accept artificial nutrition and hydration. In both cases, the SNF residents were chronically ill women aged in their mid-80s who chose to die by VSED. The lower court judges refused to intervene in either case. The primary reasons for judicial nonintervention appear to be “revulsion at the prospect of restraining for extended periods people who are competent and determined to resist nutrition” (especially when they are older and frail), and sympathy for the predicament of persons with lethal or severe chronic illnesses whose quality of life is intolerable.^4,28,29

Practice Recommendations and Discussion

Expanding on previously published general guidelines,^1,9 the Table 1 offers practice recommendations and provides a checklist for LTC facility clinicians, administrators, and staff caring for residents requesting VSED. These suggestions are based primarily on expert opinion (my own and the opinions of other commentators referenced herein). Studies of the benefits, risks, and burdens of interventions for people requesting hastened death by VSED near the end of life are needed but in general are not yet available.

A request for hastened death, whether by VSED or another means, must initially be considered an opportunity to explore comprehensively the concerns underlying the request.^1,3,30 The healthcare team should evaluate and try to ameliorate potential physical, psychological, social, and spiritual causes of suffering before responding directly to the request.^3,30 This includes assessing for remediable underlying problems such as depression and uncontrolled physical symptoms, and considering the expected clinical course of the resident's illness. Facility staff can help ensure that these residents' concerns are fully explored, and that optimal care is provided to residents who continue to desire hastened death despite a vigorous effort to relieve suffering. ⁸

LTC facilities can respond effectively to VSED requests and honor residents' right to self-determination while minimizing risk of harm by adhering to sound processes of resident-centered care planning and delivery. ³¹ Clinicians must ensure that the resident has decisional capacity to make a fully voluntary, informed choice to VSED, as evidenced by the ability to understand relevant information, ability to appreciate the nature of one's medical situation and the consequences of one's choices, ability to reason about risks and benefits of care options, and ability to communicate a choice.^32,33

In cases where the resident's decision-making capacity may be affected by depression, psychosis, or another mental health condition, consultation from a mental health specialist should be obtained. In some cases, residents at risk to lose decision-making capacity in the foreseeable future (e.g., those with Alzheimer disease) may wish to complete an advance directive specifying conditions, under which they would not want assistance with oral food and fluid intake. The feasibility and acceptability of such directives has recently been explored in articles by several commentators,^24,34,35 but this topic is controversial and beyond the scope of this article.

Concerns by facility staff that allowing a resident to enact a VSED plan would make them complicit in suicide are best addressed by engaging in careful interdisciplinary care planning to understand the reasons for requesting VSED and ensure that this choice is a thoughtful, well-considered decision to choose death when the alternative is ongoing, intolerable suffering, or unacceptably prolonged dying from the resident's perspective. ⁴ Staff must bear in mind that for many of these residents, the choice to VSED reflects a desire to exert as much control as possible over their deaths. ⁵

If there are unresolved questions regarding decision-making capacity, mental health issues such as depression, or concerns about suicidality, consultation should be requested from a palliative medicine specialist, psychiatrist, bioethicist, or other qualified physician.

Residents and families must understand that they may need considerable resolve to enact a VSED plan, thirst may be difficult to manage, and sometimes more than one attempt is required to see the process through to completion.

Before beginning VSED, plans should be made with the resident and staff about how to manage requests for fluids in the event the resident becomes confused from delirium toward the end of the process. In some cases, a resident may ask facility staff to enforce a Ulysses contract, in which the resident indicates before starting VSED that they are not to be given fluids once VSED has commenced no matter how much they request them. The resident should be informed that these contracts cannot be honored by front-line staff who may feel they are increasing the resident's suffering if required to withhold fluids from a resident who is requesting them. In these situations, the resident has the option to reinitiate the VSED process later.

Resident care conferences and family meetings are appropriate care planning venues and should be clearly documented. These meetings are essential to ensure that all stakeholders have an opportunity to air concerns before VSED, thereby reducing the potential for litigation or later accusations of neglect from staff or family objecting to VSED. An advance directive must be completed identifying appropriate surrogate decision-makers, along with a clear description of the resident's care goals and reasons for refusing oral nutrition and hydration (and other LST), and whether hospital transfer is desired under any circumstances.

Residents undergoing VSED are expected or at risk to develop manifestations typically viewed as adverse outcomes in LTC settings, including weight loss, deterioration in function, delirium, and death. The interdisciplinary care plan must include specific instructions for front-line caregivers on how to respond to resident requests to resume food and drink, and must address anticipated problems in skin care, mobility, activities of daily living, oral care including xerostomia, pain management, cognition, and bowel and bladder function.

A plan for intensive management of severe agitated delirium should be formulated in advance, and palliative sedation considered if less drastic interventions are unsuccessful. ¹ Palliative care consultation is valuable to anticipate and assist with symptom management issues, and ongoing interprofessional hospice care is indicated to provide additional support to the resident, family, and LTC team throughout the VSED process.^9,36

LTC facility leaders must consider the potential for other residents to be adversely affected during a resident's VSED process. If the VSED process is witnessed by other residents, confidence in their own care could be undermined. Accordingly, residents undergoing VSED should receive care in a private room, which may not be feasible or available in some LTC facility settings. To allay concerns for accusations of neglect based on withholding oral nutrition and hydration, staff may choose to offer a resident the opportunity to eat and drink, but if not discussed and agreed to in advance, this could be viewed as coercing the resident to abandon VSED. ¹⁹

If the resident asks to resume oral intake after starting VSED, staff should assess the situation as indicated in the Table 1. As VSED continues, the resident will likely become increasingly weak and at some point will no longer be able to self-ingest food and drink even if placed at the bedside.

For many front-line care facility staff, a VSED request runs counter to deeply held training to offer food and drink by mouth. Signs of resident distress during VSED along with direct requests for water from the resident are likely to cause staff distress and may result in staff giving water to the resident whenever requested (instead of first inquiring whether the resident intends to discontinue VSED). Facilities may struggle to accommodate conscientious objection concerns regarding VSED from staff, and it may not be possible to find alternative caregivers to cover all shifts for residents choosing VSED.

Placement of a resident on hospice status can provide reassurance that all dimensions of suffering for residents choosing VSED are being addressed. In addition, when residents undergoing VSED are enrolled in hospice, it may be more acceptable to regulators, facility leaders, and staff with quality of care concerns that the resident is losing weight and will ultimately die within a short time, even if appearing relatively robust based on initial RAI/MDS or other assessment.

Even with hospice status, significant challenges to VSED may remain for the LTC facility. Staff may perceive conflicts between the mandate to promote comfort (which may be compromised during VSED) and resident autonomy (especially if the resident's commitment to continuing VSED fluctuates).

Medical directors and LTC facilities may vary in their willingness to declare a resident “hospice appropriate” when a resident with >6-month prognosis requests VSED. ⁹ CMS rules for hospice enrollment require hospice medical director certification of a prognosis of ≤6 months, ³⁷ and some medical directors may be unwilling to approve enrollment until the resident has demonstrated persistence and commitment during VSED. ⁹ Similarly, residents who change their minds about VSED or are unable to continue VSED and resume oral intake may be disenrolled from hospice services. Discussing these issues with a local hospice medical director may help resolve concerns about hospice eligibility. ³⁶

Variability in state laws may impact residents of LTC facilities choosing VSED. Some states have advocacy resources available to residents wishing to VSED, ³⁸ with an interest in ensuring that facilities make reasonable accommodation to honor resident rights. However, a few states, including New York, New Hampshire, and Wisconsin have statutes limiting the withdrawal of orally administered food and fluids for an incapacitated patient, even if a surrogate decision-maker or directive indicate otherwise. ³⁹

Regardless of jurisdiction, LTC facilities caring for residents wishing to VSED should ensure that the resident's decision-making capacity is established; the choice to VSED is voluntary, and the alternatives, risks, and benefits are fully explored; a surrogate is available whose ability to speak on behalf of the marginally capacitated resident's wishes is beyond reproach; and an advance directive is in place identifying situations in which the resident would not want oral food and fluids.

Conclusion

Considering the growing population of older adults; the high prevalence of severe chronic degenerative and lethal illnesses in LTC facility residents; and the desire of some residents to control the circumstances of their dying, requests for hastened death from residents will likely increase. There has been little published literature to date on VSED in any setting, and even fewer publications specifically addressing VSED in institutional settings.

Facilities caring for patients similar to Mr. S are entrusted with the responsibility to honor residents' right to choose and direct their own care, by ensuring comprehensive evaluation for potentially remediable causes of suffering; determining whether VSED is an appropriate response to requests for hastened death; and where appropriate, skillfully managing care during VSED. Although general guidelines for VSED have been proposed,^1,9,19 more detailed evidence-based guidelines are needed along with guidance on best practices for LTC facilities responding to VSED requests. These unmet needs should become a priority for professional LTC organizations.