Medical Aid in Dying (Rubin 2/26/2025)

A recording of this presentation is available HERE. 

Many thanks to Dr. Rebecca Rubin for an excellent talk on Medical Aid in Dying (MAID), California's legislation, which allows patients with terminal illness (<6 month prognosis) to request and be prescribed medication to self-administer to end their own life. 

This was a fantastic presentation that included the history of physician-assisted suicide and euthanasia as well as present moral and ethical challenges. Do watch if you have 45 minutes!

My notes from this presentation:

  

Documentary: How to Die in Oregon (2011) follows the stories of terminally ill patients in Oregon as they navigate physician assisted suicide.

Medical aid in dying, in which a patient must self-administer lethal medications, is not the same as physician-assisted suicide, in which a physician does the administration.

And yet, MAID is still controversial, brings up many social, cultural and ethical issues, including:

• patient autonomy (the right to make this choice)
• beneficence (do no harm)
• the ethical difference between prescribing medication to end someone's life vs. withdrawing life-sustaining care
• physician patient relationship

Medical Aid in Dying was legalized in California via the "End of Life Options Act", which took effect in June 2016. This followed Oregon's law, "Death with Dignity" which passed in 1997.

The AMA has formally opposed "assisted suicide" since 1993. This was affirmed in 2018 in a close vote. In the same year (2018), the AAFP broke ranks with the AMA and took a position of "engaged neutrality" and deemed the decision a personal one between a physician and patient.

Reasons patients choose MAID from a 2024 Oregon survey, The Commpasion and Choices Meidcal Aid in Dying Utilization Report:

• loss of autonomy (91.6%)
• loss of dignity (63.8%)
• control of bodily functions (46.6%)
• burden on others (43.3%)
• pain control (34.3%)
• finances (8.2%)

The most common illnesses for which people request MAID are cancer>> neurodegenerative>> cardiovascular disease. BUT disproportionate % of people with ALS choose MAID

-88% of people who choose MAID are simultaneously in hospice

-men=women (no data on non-binary, trans)

-disproportionate rates of white and college educated patients

-while rates are rising in BIPOC, still much lower than white

There are currently 11 states in the USA that legally permit MAID (see image)

There are also different policies and procedures, most notably in Europe, but also in parts of Latin America and Oceania (see image)

In California, patients must:

• Independently and voluntarily request info from two providers

• Prescriber and consulting physician

• Some states require written request with witnesses
• Mandatory waiting period of 2-15 days
• Terminal illness, life expectancy <6 months
• Be over the age of 18
• Have the mental capacity to make decision
• Physically be able to self-administer meds into GI tract

Evaluation and death must occur within a state’s borders

The Netherlands and Switzerland are both known for more liberal policies around death and dying in patients with terminal illness

• In the Netherlands, this includes: the possibility of either medical aid in dying OR physician assisted suicide, services available to patients > 12 years old

In Switzerland, their exists "altruistic assisted suicide by non-physicians", Dignitas in Zurich, is open to foreigners as well, 88% of Swiss people believe in MAID, but euthanasia is illega

Access can be an issue:

• Medication costs ~$600-$800 
• Independent physicians (private pay) charge between $2000 and $3000 for their services
• Health plans are not required to cover
• SNFs have varying rules about what can happen in their facilities

In SoCo, there are 6-7 current consulting physicians but not many prescribers

Kaiser has a robust internal referral system

Some religious intuitions forbid discussing MAID with patients

There does exist the Sonoma County End of Life Doula Initiative. "Death Doulas" help patients and families prepare for death, including planning end of life celebrations, discussing fear, writing stories, etc

Which medications?

Standard medication before 2016 was secobarbital, a potent barbiturate with a time to death that averages 30 minutes. Since 2016, a cocktail that includes medications that decrease respiratory drive, cause an arrythmia, suppress escape rhythm (+nausea meds). See slide below for dosing.

One of the current areas of controversy in MAID is assistance for "psychological suffering"-- in the Netherlands, there have been increasing numbers of patients receiving MAID for mental illness (though rates are still very low--  95% of people who apply are rejected).

Conclusions:

• MAID is legal in 10 states plus Washington D.C.

• Criteria for MAID: 

• Independently and voluntarily request info from two providers

• Life expectancy<6mo

• Waiting period 2-15

• Have capacity

• Self-administer into GI tract

• Medication protocol: DDMAPh (digoxin 100mg, diazepam 1gm, morphine 15mg, amitriptyline 8gm, phenobarbital 5gm)

Resources:

• ACAMAID for more information for clinicians and patients, https://www.aadm.org/ 

• Compassion and Choices for Advocacy, https://compassionandchoices.org/

Inpatient End of Life Care (Selby, 10/9/24)

A recording of this presentation on Inpatient End of Life Care is available HERE.

***

We are so lucky in the hospital to have a talented and knowledgeable hospice liaison, Kristi Selby RN, who very much guides us through the process of transitioning patients onto hospice in the hospital. Most of those patients then discharge to home or the community, but occasionally we get to be witness to death of patient in the hospital. I am personally grateful for Kristi's attentive care of a patient with shared this past week.

I am also grateful to her for an excellent presentation she gave this week outlining the basics of hospice definitions, eligibility, services, and philosophy. Please watch the above link for the whole presentation. If you just want my notes, here they are:

Hospice is a level of care, not a place. Hospice offers expert medical care, pain management, emotional and spiritual support that is tailored to each patient (not to the disease). It includes facility support, bereavement for up to 18 months, and a focus on caring, not curing. It takes into account important aspects like anticipatory grief.

Just like many people these days have birth plans, hospice can help people have the death they want -- a death plan, of sorts. 

In order to be eligible for hospice, you need to have:

• terminal illness
• <6 months prognosis
• no curative treatment desired

While sometimes the condition of a "terminal illness" is obvious, but there are possible factors that can support eligibility for diagnoses that are less routine. These include: weight loss, a decrease in fluid/food intake, recurrent infections, increasing difficulty in attending to ADLs, frequent hospitalizations and/or ED visits, frequent falls with increasing weakness, and rapid progression of disease.

Some quantitative measures (e.g. Albumin <2.5 or EF <20%) can also help make patients eligible for hospice care. 

Additional information that may indicate hospice eligibility includes a change in function, a change in nutritional status, a change in weight, and a change in alertness. Don't forget to document these in your outpatient charts. AND, when in doubt, ask a hospice liaison for help!

Common barriers to entry into hospice include: 

• cultural/death taboo
• many people are unaware of hospice and hospice services
• family or providers don't want to take away hope
• there is a misunderstanding of what hospice is (it's not just give me morphine and kill me)
• death is really hard to talk about!

Hospice levels of care:

• Routine (multidisciplinary team with many visits/week in the home, SNF, etc)
• Continuous care (8 hours shifts, generally by RN)
• Respite care (short term, up to 5 days at a SNF for caregivers)
• General inpatient (GIP), in which a patient who is not stable to receive routine hospice care at home and/or needs up titration of medications can receive that level of care in the hospital

Routine hospice care gets reimbursed about $300/day; in contrast GIP costs Medicare about $2000/day so it must be justified on a daily basis. Issues that can justify GIP hospitalization include pain control, SOB, agitation, nausea/vomiting, wound care or any "skilled' needs

When a GIP patient is in the hospital, we focus on symptom management, which can be a shift for many hospital staff. Hospital care looks different for patients who are dying compared to those who are not dying. This can lead to nurse discomfort. It's important to talk about. In addition, more meds than we are generally accustomed to is better for comfort. We use benzos and opiates together in hospice care for comfort (the exact opposite of what we do for non-hospice patients). 

Finally, Kristi spent some time talking about how every person's situation is unique, every culture is distinct, and in hospice care we are really looking to provide the type of death the patient and their family desire. This may look very different than the type of death WE desire. That difference is okay, but we need to acknowledge it and be sure not to let our medical assumptions get in the way of what patients want. 

End of Life Care: Cultural Values in the Latinx Community (Panameño, 3/3/2021)

Dr. Karla Panemeño gave thought-provoking and important Grand Rounds this week on End of Life Care: Cultural Values in the Latinx Community. You can watch a recording of her presentation here: video to be uploaded.

Dr. Panemeño began her presentation with a brief history of hospice, and she pointed out that hospice is very much a "western phenomenon" with much of Latin America is still lacking the concepts of hospice and palliative care principles embedded in their own healthcare systems. She also reminded us that the Latinx community is the fastest growing ethnic minority group in the US, and that the COVID-19 Pandemic has disproportionately affected Latinx in our country (3x the hospitalization rate) and our own local community (while Latinos make up 27% of our SoCo population, they comprise 67% of our cases).

There is mixed evidence on Latinx use of end of life services, but generally the Latinx community tends to be less likely to have an advanced care plan and less likely to take advantage of hospice service. There are many reasons why this may be true, including: language barriers, financial barriers (many immigrants are not eligible for Medicare), knowledge about the resources, and cultural values.

Dr. Panameno then spent a good percentage of her remaining time describing key Latinx cultural values that may influence the interactions of Latinx patients with end of life care. She encouraged us that recognizing these cultural values may help us give better care. She reminded us, however, to be careful not to generalize, as the Latinx population in the US is itself a diverse group of people. Also, being aware of an immigrant patient's level of acculturation is important in understanding how these values shape their decisions

• Familismo (family unit)
• Personalismo (personal interactions)
• Respeto (respect)
• Confianza (trust)
• Fatalismo (fatalism)
• Dignidad (dignity)

For me, exploring these cultural values and how to integrate them into the care of acutely and chronically ill and dying patients is such an important take home message.

Here are a few pearls:

Familismo is a family centered model of decision-making highly valued in the Latinx community, may be valued more than autonomy (whereas medical system often values autonomy over all else), involves broad networks of support that extend beyond the nuclear family 

• this may be seen in medical decisions being made as a family unit, rather than by an individual
• also family members very much see themselves as caretakers and often have a strong sense of duty to care for their dying family member
• How do we navigate familismo in the care of patients?
• identify the family spokesperson
• actively engage family members in decisions
• educate and support the whole family

Respeto is a notion that relationships are based in common humanity, and one must establish respect as part of that relationship

• this may be seen in hierarchy within families as to who is designated spokesperson
• patient and family may not be assertive in expressing their concerns, disagreements with clinicians

Personalismo is a value that places an emphasis on your personal interactions, rapport is built on warmth and regard

• pleasant and agreeable conversations with healthcare provider (even when they disagree)
• may not want to disclose poor prognosis to the patient
• How do we navigate personalismo and respecto in the care of patients?
• Be respectful (in the language you use, who you address, etc)
• Respect the familial hierarchy
• Give families time to process
• Take time to know each member of the family -- don't underestimate the value of family 

Confianza is trust in a person with the belief that the other person in the relationship has your best interests in mind.

• many Latinx patients have experienced discrimination based on race, language, etc in the healthcare setting
• How do we navigate confianza?
• follow up on promises, spend additional time with patient/family, make small talk, have open dialogue about prejudice, discrimination, language barriers
• use important key community members (e.g. pastor)

Dignidad: feeling worthy and valued

• may manifest as anxiety at time of death, fear/anger around dying, 
• How to navigate? Open conversation with family members, be curious about the feelings in the room

Fatalismo: a belief ones future is not in your own hands, not in your own control

• patients may seek care late in their illness
• may express hope for a miracle
• How to navigate? Explore thoughts/feelings/values, validate the role of others' control

I encourage all of us who take care of Latinx patients to consider how these cultural values may influence our patients' interactions with us and with the healthcare system, and not to overgeneralize but rather apply this lens humbly in how we care for patients.