This document discusses voluntary stopping of eating and drinking (VSED) as a means for patient-controlled dying in New York state. It describes two groups that choose VSED - terminally ill patients receiving hospice care, and non-terminally ill patients suffering from progressive or permanent conditions. For terminally ill patients, VSED is generally uncomplicated and death occurs peacefully around 10 days after starting. Non-terminally ill patients face greater challenges, unpredictable courses, and difficulties like thirst that require greater palliative care. The case of Elliot, an 86-year-old non-terminally ill man who chose VSED, illustrates the struggles he experienced over 19 days as his hospice team had little
This document discusses voluntary stopping of eating and drinking (VSED) as a means for patient-controlled dying in New York state. It describes two groups that choose VSED - terminally ill patients receiving hospice care, and non-terminally ill patients suffering from progressive or permanent conditions. For terminally ill patients, VSED is generally uncomplicated and death occurs peacefully around 10 days after starting. Non-terminally ill patients face greater challenges, unpredictable courses, and difficulties like thirst that require greater palliative care. The case of Elliot, an 86-year-old non-terminally ill man who chose VSED, illustrates the struggles he experienced over 19 days as his hospice team had little
This document discusses voluntary stopping of eating and drinking (VSED) as a means for patient-controlled dying in New York state. It describes two groups that choose VSED - terminally ill patients receiving hospice care, and non-terminally ill patients suffering from progressive or permanent conditions. For terminally ill patients, VSED is generally uncomplicated and death occurs peacefully around 10 days after starting. Non-terminally ill patients face greater challenges, unpredictable courses, and difficulties like thirst that require greater palliative care. The case of Elliot, an 86-year-old non-terminally ill man who chose VSED, illustrates the struggles he experienced over 19 days as his hospice team had little
This document discusses voluntary stopping of eating and drinking (VSED) as a means for patient-controlled dying in New York state. It describes two groups that choose VSED - terminally ill patients receiving hospice care, and non-terminally ill patients suffering from progressive or permanent conditions. For terminally ill patients, VSED is generally uncomplicated and death occurs peacefully around 10 days after starting. Non-terminally ill patients face greater challenges, unpredictable courses, and difficulties like thirst that require greater palliative care. The case of Elliot, an 86-year-old non-terminally ill man who chose VSED, illustrates the struggles he experienced over 19 days as his hospice team had little
• Hunger and Thirst partially predicated on wanting
to live Social Considerations
• Politically complex for everyone
• Hard to advocate for VSED and also PAD; PAD
looks better if VSED is unattractive
• Value of choosing a legal option
My Personal Connection
• #1 Patient DM 1998
• #2 SLC mother of teenagers ALS
• #3 My revered and heroic mother in law
• #4 64 years SP leukemia and stroke, aphasic X 7
years Lessons from These People • Typical course: One week normal consciousness, few days of increasing somnolence. Unresponsive for hours to a day. (Key is MINIMAL FLUID)
• Quicker than PAD qualifying process
• All remained upbeat
• Demented, aphasic patient can do it
• Their symptoms required minimal management
Lessons from These People • Value of open and legal
• Value of patient directed process
• Hunger and Thirst partly driven by a desire to live
• Many Symptomatic Benefits
• Quicker than full PAD process
• Can be explored part way
Symptomatic Benefits • Decreased dyspnea
• No death rattle
• Decreased edema
• Euphoria?
• Decreased need for toiletting
• Decreased Weight Insight of the Day: Downside, cf. PAD
• Death Can’t be scheduled
• May take more motivation
• Some risk of agitation
Care Issues
• Permission from Family and Caregivers: this is
complex and may be surprisingly challenging
• Resolution of doubts and guilt
• Enough help at home
• “Failure” vs “Exploration” Care Issues
• Consider initial diuretic
• Mouth Care • role of intermittent sedation; benzodiazepine or opiate Advantages • Legal and relatively quick
• Patient driven
• Reversable: can be explored
• Has a natural feel, less startling
• Less dyspnea, edema, urine output
• Necessary Plan B if PAD unavailable
Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
Judith Kennedy Schwarz, MSN, PhD
Clinical Director End of Life Choices NY www.endoflifechoicesny.org
New York State = Land of “NO”
In addition to no legal access to PAD Conservative legislators > cautious legislation Took 15 yrs pass surrogate decision‐making law ‐ “natural feeding” was NOT included in its definition of health care ‐ thus NYS surrogates legally precluded from deciding to withhold hand feeding from incapacitated pts ‐ regardless of patient’s prior statements or wishes
1 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
VSED: Only legal means for
patient‐controlled dying in NYS ● Four pre‐conditions necessary for “success” > defined as peaceful, gentle death within days to 2 weeks after start of fast i. A well‐informed, capacitated patient with a determined will to hasten death ii. Access to hospice or palliative oversight iii. Supportive care‐givers – ultimately 24/7 iv. Ongoing family or other social support
EOLCNY provides information,
support & advocacy Two groups of patients > > different VSED experiences 1st group = terminally ill, receiving hospice care when choose VSED Often diminished appetite for food or fluids VSED process generally uncomplicated; few associated symptoms to palliate [dry mouth?] Hospice supportive; death generally peaceful On average, death occurs 10 days after start of fast
2 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
2nd group = NON‐terminally ill
Decisionally capable, suffering incurable & progressive disease, or permanent & intolerable condition (i.e., post stroke) Can be difficult to obtain palliative over‐sight Challenging & unpredictable clinical course Hard to predict duration of fast Feelings of dry mouth &/or thirst often problematic Issues of cognitive disability add to challenges
This is Elliot
3 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
Non‐terminally ill patients’ stories
86 yrs, married x 31 yrs, accomplished artist & great cook who loved food History of multiple spinal surgeries, ^ BP, heart disease, insulin‐dependent diabetic Primary complaint: severe cervical stenosis > pain, muscle weakness & numbness/tingling fingers No longer able to paint, cook, walk, or manage ADLs – bed‐bound “Unacceptable” quality of life; told PCP wanted to stop LST with hospice support*
Request to stop LST ‘heard’
As request for assistance in suicide Ordered 3 wk trial anti‐depressants + PT & OT No change in desire to stop all LTS > > hospice Although ‘accepted’ into hospice program… possible ‘ambivalence’ within team No previous experience with non‐terminally ill patient who chose to VSED During 19 days of his fast, only analgesic ordered was tylenol
4 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
Elliot struggled… Easily stopped eating Going without fluids very difficult By day 9 – small dose of ativan was ordered By end of 2nd wk – haldol was added b/c of episodes of agitation & hallucinations Complained of head aches [ice packs helped] & very dry mouth [was a mouth breather] Wife requested stronger pain meds…to no avail During 3rd wk he would wake his wife shouting “I’m DYING of thirst!”
Struggle ended… By day 18 Elliot was non‐responsive; he grimaced & appeared restless & uncomfortable That night, an LPN was sent by hospice She recognized that he was in pain…hospice agreed to morphine Elliot died the next morning His wife blames herself for not advocating more strenuously for earlier use of opiates…..
5 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
A different challenge Donald is 78 yrs – diagnosed w MCI & early stage Alzheimer’s disease a year ago He disagrees with MD’s diagnosis – claims he has always been ‘forgetful’ His wife contacted EOLCNY for assistance in helping him complete an advance directive He had completed ‘5 Wishes’ & wrote “If I ever have dementia, I want something done to end my life” Family unsure what their role should be
Initial meeting Had many prior conversations with his wife ‐ suggested they look at descriptions of AD stages to determine when he would want to forgo oral feeding (Menzel & Chandler‐Cramer 2014) At 1st meeting Donald was adamant that: he didn’t have AD, never wanted to be in nursing home & wanted oral feeding withheld by wife/family – REGARDLESS Also stated he had low tolerance for any physical discomfort
6 Hastening Death by VSEd ‐ 10‐14‐2016 Clinical Findings ‐ Schwarz ‐ PowerPoint Handouts
Tremendous challenges Short term memory loss & difficulty planning May be too late to create useful adv dir that reflects his personal values re ‘future’ dementia & realistic instructions about withholding oral feedings He seemed unable to appreciate family’s (emotional, moral & ? legal) difficulties re withholding food/fluids from someone who seems to enjoy & cooperate in feeding Ongoing case…
Final thoughts Providing support for non‐terminally ill pts & families who choose VSED is very time consuming Families need a great deal of emotional support throughout the process…and after death There will be increasing interest in VSED from future patients diagnosed with Alzheimer’s Creative solutions must be found to challenges faced by such pts/families who wish to control timing of death
