VSED—VOLUNTARY STOPPING

EATING AND DRINKING IN

ORDER TO HASTEN DEATH
Linda Ganzini, MD, MPH
Oregon Health & Science University
VA Portland Health Care System
Easy and Hard Cases
• Easy Cases—patient with terminal illness, already hospice enrolled,
diminished appetite and thirst, decide to stop eating and drinking
fluids, support from all, remains comfortable until death.
• Hard cases—examples
• Patient who decides to pursue VSED before losing autonomy to progressive
neurological disease, otherwise mild to moderate illness burden and suffering, not
yet hospice enrolled. Develop delirium and thirst during VSED and repeatedly
requests water.
• Patient who decided to pursue VSED, has advanced physical illness, but also
mental disorder with difficult to determine effect on capacity.
• This talk will focus on hard cases
Elinor
• 92 years old, hearing impaired, early dementia, urinary
incontinence, but otherwise healthy. Had to give up driving
and finances
• Lives in small town, all grown children there.
• Unable to hear family conversations, had to give up bridge
and golf.
• Two years of consistently saying she was “done”. Bitter not
eligible for Oregon Death with Dignity Act. Not depressed,
just tired and played out. Tried one week of
antidepressants and one week of medications for urinary
incontinence. Adverse effects intolerable. Disliked hearing
aids, unable to adapt to them.
• Talked about VSED for one year before started
Elinor
• Set a date, then started to move up date, with goal to see
great grandchild one more time
• Elinor was highly private and wanted to embark on VSED
with only daughter’s help. She did not want hospice
involved.
• Long time physician had recently retired, she declined to
see new physician, but secondary to extensive community
connections, a physician agreed to come to her home and
evaluate capacity for VSED.
• Hospice notified. Hospice director evaluated her. Could
not enroll her until after VSED started
Elinor
• Day 1--2 of VSED went well.
• Day 3—Developed mild delirium with agitation. Started low dose lorazepam--
paradoxical activation. Hospice is aware and awaiting more decline
• Day 4—Hospice enrolled, nurse professed little experience this type of
situation.
• Day 4-5—Delirium worsened. Elinor forgot what was going on intermittently,
had worsening emotional lability, needed constant distraction from thirst, had
falls despite two people with her at all time.
• Day 5--family called hospice in evening stating she was suffering and
situation was not tolerable. Haloperidol and morphine started quickly.
• Peaceful within hours, died 36 hours later
• Six months later, family feels good at honoring her wishes and overall quality
of death
• Biggest challenge in retrospect: “logistics”
George
• 83 year old Veteran with advanced Parkinson’s disease
• World War 2 in Pacific theater—carried a bullet in case of
capture
• Married over 50 years to wife.
• She reported many year history of worry about loss of
control at end of life. Had cut out many newspaper
articles over the years about VSED and suicide at the end
of life.
• Started VSED at home, became confused, requested
food.
• Wife was told by a health care professional she could be
arrested for abuse if she did not feed him.
George
• Admitted to VA nursing home
• Seen by geriatric psychologist--had decision making capacity,
not depressed.
• Signed advance directive instructing that he not be given food
or fluids once he started VSED.
• Started VSED twice, each time became delirious, requested
water and food, nurses gave him oral fluids/pudding
• Each time, after being given fluids, his delirium resolved, he fell
asleep, when awoke he was furious he had been give fluids
• Significant conflict among nursing on whether his advance
directive should be honored
• Third time he was given substantial sedative medications early
in the course of delirium for thirst, died comfortably
VSED—Main elements
• Patient is capable of eating and drinking
• Patient stops all food and hydration
• Goal is to hasten death
• Result of active, voluntary decision
• Requires considerable patient resolve and discipline
• Course can be challenging and unpredictable.
• Death occurs after 1-2 weeks
• Not an option for those with acute suffering
• Theoretically does not require health care provider assistance or
approval
• But involvement by health care team is very important:
• Ensure adequacy of palliative care
• Capacity and mental health assessment
• Symptom management as process unfolds

• Quill et al. JAMA IM, January 2018

Potential Last Resort Options

Medications such as opiates for severe Legal and ethically accepted

pain/dyspnea used proportionately

Stopping or not starting life-sustaining therapy Legal and ethically accepted

Palliative sedation, potentially to unconsciousness Legally accepted

Ethically controversial if patient or physician’s intention is
to hasten death
Voluntarily stopping eating and drinking Not illegal; legality not tested
Ethically controversial

Physician Assisted Death (aka physician assisted Legal in 7 US states; all of Canada
suicide or medical aid in dying) Illegal in over 30 states and uncertain in others
Ethically controversial

Voluntary active euthanasia Illegal in all US states

Legal in Canada
Ethically controversial
Advantages of VSED
• Initially, entirely under patient control
• Opportunity to bring family together, work on life closure
issues
• May be acceptable for patients/families opposed to PAD
• May be accessible for patients who are unable to access
PAD
• More acceptable to health care providers
 Physician Assisted Death (PAD) versus VSED
PAD VSED
Health Care Professional Required Not required (though
participation difficult to avoid)

Informed Consent Required Not required, if no health

care professional
participation
Decision making Clearly delineated in law Dependent on clinical
capacity standards situation

Health care team Health care team Greater risk of

members choice to members can choose abandonment if patient
participate not to participate goes ahead despite team
members declining to
participate.
Trajectories of VSED
Terminally ill
• Advanced cancer, ALS, COPD
• Often already receiving
hospice care
• Already diminished hunger and
thirst
• Usually uncomplicated course
• Few additional symptoms to
palliative
• Hospice supportive
Schwartz, End of Life Choices NY
Not Terminally ill
• Early dementia, post stroke, other
progressive neurological disease
• Decisionally capable without
mental illness
• Not initially hospice eligible, may
be difficult to get palliative care
oversight
• Dry mouth and thirst can be
problematic
• Challenging and unpredictable
clinical course
• Family needs to put together
extensive caregiving support
Clinical care in VSED
• There are a variety of websites that advise patients on VSED
• www.phyllisschacter.com
• Patients are advised to reduce calories to 500 per day for several
days before starting VSED to accelerate ketosis
• Care providers should be ready with mouth swabs, mouth sprays,
humidifier, lotion, eye drops
• Patient may need at least two caretakers 24/7 during periods of
VSED
• Fall risk
• Care providers should be have thought through how to respond to
requests for fluid, especially when patient becomes confused.
• Hospice should be aware of patient and become involved,
especially once sedating or other palliative medications are
needed.
Delirium in the Course of VSED
• VSED patients develop dehydration and organ failure
which results in delirium
• Delirium complicates VSED
• Patients forget why they are not drinking
• Resolve is undermined, as patient cannot distract self
• Decision making capacity lost
• Patient may attempt to enforce Ulysses contract
• Ethically and emotionally difficult for caregivers
• Even small amounts of water may prolong the VSED
process
• Caregivers need to be prepared to give good mouth care,
distract the patient, give sedating and psychoactive
medications—can be labor intensive
• N Engl J Med 2003; 349:359-365
VSED in the Netherlands
• Survey of 978 physicians, 72% response rate
• 46% cared for a patient who hastened death by VSED
• Subset described 99 cases
• 76% had severe disease
• 77% dependent in ADLs
• 80% over age 80 years
• Reasons for VSED
• physical 79%
• existential 77%
• dependence 58%
• Median time before death was 7 days
• Symptoms before death include
• pain
• fatigue
• thirst
• impaired cognition

• Bolt et al, Annals of Family Medicine, 13:421-428, 2015

Views of Oregon hospice workers
• Survey of 307 hospice nurses (71% response rate) and
83 hospice social workers (78% response rate)
• Included 50 Oregon hospices.
• 2.6% thought VSED was immoral or unethical
• 85% indicated that VSED was an option for physical suffering
• 76% thought that VSED was an optional for psychological of
spiritual suffering
• 71% would personal consider VSED
• 69% thought that VSED was fundamentally different than physician
assisted death (PAD)
• More supportive of VSED than PAD (p < 0.001)

• Harvarth et al, Int J Palliative Nursing, 2004, 10:236-241

 Collaboration

+ -

Euthanasia (extra-legal) Suicide

+ Physician-Assisted
Intent Suicide (legal)

to hasten
death
Palliative Care Self-Injurious
- Hospice
behaviors / parasuicide
Non-compliance
Summary
• Standards for decision making capacity for VSED are
evolving but are likely context dependent.
• Requests for VSED for patients with early dementia or
whose illnesses are complicated by depression are
ethically complex.
• Delirium that develops in course of VSED may undermine
capacity and resolve.
• Patients and caregivers need to be prepared that VSED
can be labor intensive and can be difficult to achieve
without medical assistance.