“Brain Donation” – poem by Diane (with PSP)

We recently welcomed Diane Deaver to our local Northern California support group, which has virtual meetings for those with progressive supranuclear palsy (PSP).  Her husband Doug has joined our meetings for local PSP caregivers.

Here’s a poem about brain donation that Diane recently shared.  If you’d like Brain Support Network’s assistance in arranging for your brain donation (or a family member’s brain donation), let us know!

Brain Donation

When I don’t need my brain anymore

(Which means that I’ll be dead)

Rather than have it cremated with me,

I’ll donate it to science instead.

If I can help some others

Diagnosed with PSP

to have a better future

that would mean the world to me.

If knowing what was in my brain

would help to find a cure

it would be a mighty contribution

That’s for sure.


©Diane Deaver
PSP Poet
June 2021

Genetic Testing Resources

Brain donation is the ideal way to obtain a confirmed diagnosis while also enabling research into neurological conditions.  Many families who contact us about brain donation want genetic testing.  You have likely been directed to this page as the most efficient way to provide you the information about genetic testing.

The brain bank we work with, Mayo Clinic, does do genetic testing on donated brain tissue but does NOT share these results with families.  It is not allowed to share the results with families because the brain bank is not a CLIA-certified lab.  CLIA-certified labs are required to provide genetic counseling.  We don’t believe that any brain bank is CLIA-certified.

If there is a strong family history of dementia, Mayo definitely does genetic testing prior to the preparation of a neuropathology report for the family.  In these reports, Mayo often says things like “we generally see this particular pathology in those with a certain genetic mutation,” or “given the family history of dementia, we recommend your family consider genetic testing.”  Of course these are strong clues that something is being inherited in the family.

So what can a family do to accomplish genetic testing?  The best is to arrange for genetic testing while the person is still alive.  You might try one of the options below.

If your family member has passed away and his/her brain has been donated, if your family can find a reputable testing lab that can accept frozen brain tissue in slides, then the legal next-of-kin can direct the brain bank (including the Mayo Clinic) to send tissue to the lab for genetic testing.  Your family pays for the testing (but not the shipping).  You can ask any of these options below if they accept frozen brain tissue and can do genetic testing from that.

Let us know if you have additional questions but note that we are not genetics experts or genetic counselors!

Athena Diagnostics

Marlborough, MA
Phone: 800-394-4493, Option 2
Email: genetics[email protected]


San Francisco, CA

Phone: 800-436-3037
Email: [email protected]
Office Hours: M-F 5am to 5pm PT

Offers pre-mortem testing and genetic counseling for $250.  This lab is CLIA-certified.


Prevention Genetics

Marshfield, WI

Phone: 715-387-0484
Email: [email protected]
Office Hours:  7:30 am – 5:30 pm CST

Offers pre-mortem testing of 18 genes associated with dementia (“dementia panel”). Or testing specific to the suspected genetic disorder (“custom panels”).

Offers post-mortem testing

Offers pre-mortem banking for the case when testing is not desired at the present time

Advanced stage and end-of-life care – Webinar notes

In early May, the UCSF Memory and Aging Center (MAC) presented the fifth and final webinar in its series on caregiving for those with Lewy body dementia (LBD), a discussion of advanced-stage and end-of-life care topics. While the webinar was geared towards those caring for individuals with LBD, we felt the content would also be helpful for others with cognitive impairment or Parkinson’s disease dementia. The speaker was Maya Katz, MD, a movement disorders specialist with the UCSF Weill Institute for Neurosciences. She covered what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.

This webinar was recorded and can be viewed for free on YouTube here.

Lauren Stroshane with Stanford Parkinson’s Community Outreach viewed the webinar and shared her notes.


Advanced stage and end of life care – Webinar notes
Presented by the UCSF Memory and Aging Center
May 7, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The presentation began with an acknowledgment from Dr. Katz about the presentation: these are difficult topics that may be sad or challenging to think about. Still, it is important to have this kind of information to help you plan and prepare for the future. Topics included what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.

Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease. The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms. Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.

Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress. Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are. This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.

Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.

Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.

What does self-care look like?

  • Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
  • Promote your own well-being and seek balance.
  • Think of it as putting on your own “oxygen mask” on before you help others.
  • Build resilience in yourself.
  • Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
  • Connect with yourself and with others: “connection is protection.”
  • Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.

Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient. While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.

Motor symptoms

Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain. Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.

There are a number of strategies and techniques to manage these issues:

  • Range of motion exercises (independent or assisted) and massage to help prevent contractures
  • Skin care to ensure skin is clean and dry
  • Change positioning every 2 hours to prevent formation of pressure ulcers
  • Use a gait belt to help walk and transfer safely
  • Mechanical lifts may be needed eventually
  • Use specialized cushions or mattress to prevent pressure ulcers
  • Broda specialized positioning and mobility chairs

Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life. The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.

If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.


In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.

Some basic tips:

  • Say “yes, and…” – do not argue, even if they are hallucinating or confused.
  • Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
  • Ask “yes” or “no” questions rather than open-ended questions.
  • Maintain eye contact.
  • Offer a reassuring response to frequently asked questions.
  • Find a place and time to talk without distractions.
  • Refer to people by their names instead of pronouns like he or she, to avoid confusion.
  • Talk about one thing at a time.
  • Have patience.
  • When giving instructions, use simple sentences – one piece of information at a time.
  • Recognize what you’re up against.
  • Understand that there will be good days and bad days.

Psychiatric symptoms

Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.

Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.

At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.

The “Five R’s” from the Family Caregiver Handbook:

  • Remain calm.
  • Respond to the person’s feelings.
  • Reassure the person.
  • Remove yourself.
  • Return when you are calm.

Eating and taking medications

Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife. Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.

Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.


  • Do not use thickeners; evidence shows they can actually worsen quality of life.
  • Try carbonated beverages.
  • Try smoothie-consistency drinks; thin liquids are most difficult.
  • Give medications with applesauce or something of a similar consistency.
  • Alternate between a bite of food and a sip of fluid.
  • Have them do a chin tuck when swallowing.
  • Benevolent trickery is sometimes necessary.

Weight loss

Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.

Toileting and incontinence

Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them. Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection. The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.

Dental care

It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.

Practices to avoid in advanced LBD

In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.

Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course. Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.

Fluctuations in alertness

As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.

End-of-life care: Days to weeks

At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.

In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable. If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.

Prognostic indicators in LBD

There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.

For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs). These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.

For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:

  • Aspiration pneumonia
  • Pyelonephritis (kidney infection)
  • Septicemia (infection of the blood)
  • Stage 3 or 4 pressure ulcers
  • Recurrent fever
  • 10% weight loss (or greater) in the past 12 months
  • Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:
  1. Speaks 5-6 words per day
  2. Speaks only 1 word clearly per day
  3. Cannot walk without personal assistance
  4. Cannot sit up without personal assistance
  5. Can no longer hold up head independently

What do people die of in LBD?

There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal. Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.

Hospice care: Role of the neurologist

Right now, only about 5% of patients with LBD will receive hospice services

It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.

Medications to avoid in hospice patients with LBD:

  • Haloperidol (Haldol)
  • Metoclopramide
  • Phenergan

Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.

The Advance Healthcare Directive is a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.


Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.

Dr. Katz cited a quote from the book Being Mortal: Medicine and What Matters in the End by Atul Gawande, MD:

“… Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.”

Two questions to ask around advance care planning:

  • If you look ahead, what worries you the most?
  • When you look to the future, what are you hoping for? (in addition to a cure)

“Our ultimate goal, after all, is not a good death, but a good life to the very end.” – Atul Gawande, MD

Question & Answer Session

Q: Are the Broda chairs covered by insurance, typically?

A: Broda chairs are covered by Medicare for hospice. Without being eligible for hospice, they are difficult to get unless you pay out of pocket (they can cost thousands of dollars!).

Q: When my loved one starts coughing or choking, I worry about aspiration and start to panic. What can I do in this situation?

A: As mentioned before, don’t use thickened liquids. Make smoothies at home, offer carbonated beverages, and practice tucking the chin right before swallowing. Alternating a bite of food and a sip of liquid can be helpful. These measures tend to help most people. Keep in mind that some foods – such as steamed vegetables – contain liquid as well. Also talk with your loved one about what foods are most important to them. Try to keep perspective – you can’t prevent every risk.

Q: Does Medicare cover palliative care for those with the early stages of LBD as well?

A: Yes! Dr. Katz sees patients in her weekly palliative care clinic for those with PD and LBD, among other related diagnoses. Some of her patients she sees as often as once a month. Those who are on hospice or otherwise struggle to come in but need care can often be seen via telehealth video options.

Q: If someone doesn’t process reality well and thinks they are in an airport, how would you respond?

A: In general, try not to argue with the person. This is their reality, at least in that moment. Remain calm and non-confrontational; don’t dismiss what they are seeing or experiencing. Is it is frightening or distressing to them? If so, reassure them that they are safe and you are with them. If they are not frightened, maybe change the conversation to a different topic and move them to focus on something else. But if they’re not bothered, it’s fine. You can even steer the conversation tangentially, such as talking about vacations you have taken together in the past, or asking them where they would want to go if they could go

Q: Does UCSF handle brain donations for those with LBD, or do they refer elsewhere?

A: If they are seen at the Memory and Aging Center at UCSF, there may be other research opportunities for brain donation. The Brain Support Network is the main organization that they would refer to.

“Medical Decision Making in the Face of Serious Illness” (and COVID) – Webinar Notes

The Coalition for Compassionate Care in California (CCCC) is hosting a series of webinars on advance care planning. While these webinars are generally for healthcare professionals, lay audiences can still benefit, particularly if you are looking for some ideas on how to raise the topic of advance care planning with a loved one. (The webinars seem to be scheduled for Wednesdays at noon PT. To register, see coalitionccc.org/covid-conversations-education)

The first webinar, on Wednesday, April 8th, was about advance care planning in the time of COVID. It was 70 minutes, including about 15 minutes for questions.

With COVID-19, there is a renewed sense of urgency for us all to start or continue having conversations with our loved ones about our wishes and their wishes. If we have a chronic medical condition or if we are in the vulnerable group, do we want to go to a hospital if that’s needed? Would we want to be placed on a ventilator? For a set period of time (10-14 days, for example)? What if there is a shortage of ventilators, would we forego one for ourselves?

Many of us put off the conversation about advance care planning. But, if we aren’t willing to have this conversation now — during the COVID pandemic — will we ever be able to have it? (I should point out that a single conversation will not suffice. Experts envision continuing conversations as our own medical circumstances change.) During the webinar, the point was made that we have lots of time now to reflect and discuss things with our loved one.

One of the Coalition’s best references for lay people is this conversation guide:


You can also use the webinar as a guide in your conversations. The recording is here: (registration required)


Also, I’ve shared my notes below from the webinar. I’ve tried to add in time-stamps in case you want to forward the recording to something in particular.

Much of the webinar was a review of advance health care directives and the POLST form. Here’s what was new to me:


#1 – Given COVID, our preferences for ventilation and hospitalization should be discussed.

#2 – “What you should know before you need a ventilator”


The author of this New York Times article presents several questions we should ask ourselves including:

* what do I value about my life? (This is the usual question.)

* if I will die if I am not put in a medical coma and placed on a ventilator, do I want that life support?

* if I do choose to be placed on a ventilator, how far do I want to go? Do I want to continue on the machine if my kidneys shut down? Do I want tubes feeding me so I can stay on the ventilator for weeks?

#3 – If you have serious lung, heart, or kidney disease, you should be given an opportunity to complete a POLST at this time, because of COVID.

#4 – You can put COVID-specific instructions in Section B of the POLST. (You can find a POLST at capolst.org)


#5 – We should discuss our values, including what can/can’t be sacrificed or compromised. What is acceptable to us? How do you complete this sentence —

“I’d rather die in comfort than _____”
(example – being unable to recognize my spouse)

#6 – I thought that a POLST should be completed by everyone in a care facility. In fact, CCCC is opposed to this. (You can find a POLST at capolst.org. Talk to your physician about completing it, after having a conversation with your physician.)

A POLST should be completed if the person:
– has a serious illness
– is medically frail
– has a chronic progressive condition
– could be reasonably thought of as being within 1-2 years of death. (This is called the “surprise” question for physicians — would you be surprised if your patient died in the next year or two?)

Read all about advance care planning in the time of COVID below…



Acronyms used:
ACP – advance care planning
POLST – physician orders for life-saving treatment
HCP – healthcare professional
AHCD – advance health care directive
AD – advance directive
HC – healthcare (as in, HC agent)
SNF – skilled nursing facility
EOL – end of life (as in, EOL option act)


Medical Decision Making in the Face of Serious Illness
Webinar by Coalition of Compassionate Care of California
April 8, 2020

Notes by Robin Riddle, Brain Support Network

Karl Steinberg, MD, medical director, Hospice by the Sea
Judy Thomas, JD, CEO, CCCC (Coalition for Compassionate Care in California)

Objectives of the call:
* Explain the importance of conversations in advance care planning and POLST
* Describe purpose and content of an advance health care directive and POLST
* Explain the difference between a POLST form and a health care directive
* Discuss how the COVID-19 crisis is impacting advance care planning and POLST.


Californians can live well in the face of serious illness, including COVID-19

New CCCC campaign: “COVID Conversations”
Importance of having conversations about serious illness (and palliative care)


Advance care planning (ACP) is a series of conversations over time about:
* what is important to the individual (hopes, goals, and concerns about the future)
* the realities facing the individual (diagnoses, abilities, limitations, resources, treatment preferences)

Benefits of ACP from the person’s perspective
* increases likelihood that wishes will be respected at end of life
* achieves a sense of control
* strengthens relationships (between individual, family members, and healthcare providers)
* relieves burdens on loved ones (such as surrogates)
* eases sharing of medical information around confidentiality (HIPAA)
* provides opportunities to address life closure

Benefits of ACP from the healthcare perspective:
* person-centered care
* avoid unwanted or unnecessary care
* improved family and caregiver relations
* helps to reduce moral distress among healthcare providers. (Moral distress can be expressed as PTSD at a societal level.)

Everyone should have a chance to have their:
* wishes explored
* wishes expressed
* wishes honored

Conversations about serious illness should be happening normally — at kitchen table, in religious settings, etc.

Continuum of ACP process over time (which relies on conversations over time):
* at age 18, complete an advance directive;
* update periodically;
* if diagnosed with a serious, chronic, or progressive illness, complete a POLST form.

(12:12, but he starts addressing these topics at 13:08)

How is COVID-19 impacting conversations about ACP and POLST?
* created a sense of urgency
* people are actually talking about serious illness, end-of-life, and their wishes
* we have time to reflect and interact with our families (even over Skype or FaceTime)
* threat of death
* lots of media stories
* not business-as-usual
* can’t have face-to-face conversations

Lots of great resources out there, including CCCC, Conversation Project, Prepare for Your Care, CAPC (Center to Advance Palliative Care), and Five Wishes. These websites are getting lots of traffic. And legacy.com.

So much better to plan ahead. We know things are going to get worse.

Ramped up use of palliative care services.

What HCP (healthcare professionals) need to hear from patients:
* surrogate: who is to speak for the patient if incapacitated
* treatment wishes: given COVID-19, ventilation and hospitalization should be addressed; resuscitation (CPR)
* values, goals, preferences: what makes life worth living; what can/can’t be sacrificed or compromised; what needs to be completed before death; what is acceptable to the patient (“I’d rather die in comfort than _____” – unable to recognize my family, for example); special faith-based or cultural preferences

What patients need to hear from HCP:
* ask what they know and what they want to know
* diagnoses
* threats to wellbeing and function
* natural progression of underlying disease process — including COVID-19, based on their specific health conditions
* treatment options and likely outcomes: benefits; risks and burdens; short and long-term results/expected outcomes; alternative interventions/treatments; course of disease with no aggressive intervention; comfort-focused interventions (medications, palliative sedation)


This is a good opportunity to be having these conversations. (The following information is more of a reminder of best-practices.)

What is an AHCD (advance health care directive)? Tool to make healthcare wishes known when a patient is unable to communicate. Allows a person to do either or both: 1) appoint a surrogate decision-maker (healthcare agent) and/or 2) give instructions for future healthcare decisions (treatment).

If you can only do one thing for yourself, name a surrogate!

Choosing a surrogate: willing and able; available; can make difficult decisions; knows values and preferences; will speak for you despite their interests/beliefs. May or may not be the “closest family member.” Can also name whom you don’t want to speak for you.

Who cannot be a surrogate (unless the person is related to the patient): patient’s supervising healthcare provider; any employee of the institution where the patient receives care; any operator or employee of facility where patient lives.

Verbally appointed surrogate: duration of appointment is for the period of health facility stay or 60 days, which ever is shorter. A verbally appointed surrogate has priority over a healthcare agent named in a document for the specified duration.

ACP documents in CA: (three examples)
* CMA’s “My Health Care Wishes”
* “California Advance Health Care Directive” – very easy-to-understand; from Prepare For Your Care
* something prepared by an attorney (“legalistic-looking”)

For an advance directive to be legal in CA, the document is required to have: individual’s signature; date of execution; witnessed or notarized

* Who cannot be a witness: patient’s HCP or employees of HCP; operator or employee of care facility; the agent named in the advance directive
* ONE of the witnesses cannot be related to patient (by blood, marriage, or adoption) or entitled to a portion of the person’s estate
* If person resides in a SNF (in CA), LTC ombudsman must witness
* Only witnessing a signature (doesn’t need to see the full document)

How can witnessing happen with social distancing?
* CCCC is pushing that a document be honored even if not witnessed. CCCC is working with LTC ombuds.
* Some notaries are setting up remote signature.

POLST (Physician Orders for Life-Sustaining Treatment):
* portable medical order
* provides instructions for specific medical treatment
* legally binding across healthcare sites in CA
* valid only if appropriately signed
* not for everyone. Including not for everyone nursing home or assisted living resident. Designed for those in late-stage illness.

Advance directive vs. POLST
AD: general instructions for future care; needs to be retrieved; many different forms; signed by patient and witnessed (or notary)
POLST: specific orders for current care; stays with patient; single form; signed by patient (or HC agent) and physician


Indications for POLST form: serious illness; medically frail; chronic progressive condition; “surprise” question (would you be surprised if your patient died in the next year or two)

It’s wrong for care facilities to hand out the POLST forms.

If you want current standard of care, which is aggressive care, you don’t need a POLST.

(30:18) Indications for POLST during COVID crisis: Have the conversation! Probably expand the population who could be offered POLST because most people want to know about their prognosis in light of COVID. He doesn’t think we need a COVID-specific form. (Anything COVID-specific can be written in on Section B. Example – Some people may volunteer to forego ventilation if there’s a shortage.) Ventilator issues (10-14 days of ventilation are often needed).

These conversations should be happening for anyone with a serious, chronic condition, even if they aren’t in the last year or two of life.

If you have serious lung, heart, or kidney disease, you should be given an opportunity to complete a POLST at this time, because of COVID.

There has been discussion of blanket orders of “no CPR for all COVID patients.” (He hasn’t heard about this in CA hospitals.)

(34:18) POLST form/Section A on CPR: DNR (or DNAR) doesn’t mean “just let me die”! Section A applies if patient has no pulse and is not breathing — which means that person is dead. (This is stated on form.)

(35:44) POLST form/Section B on interventions: If you have a pulse and are still breathing, Section B is of interest. You can choose full treatment, selective treatment (“no heroics;” most people select this), or comfort-focused treatment (“hospice philosophy”; not so interested in prolonging life but interested in being comfortable).

You can be DNR (Section A) and still get full treatment (including being on a ventilator). Full treatment is everything short of chest compressions and shock. If you check “Give CPR” in section A, you must check “full treatment” in section B.

People should be aware of poor prognostics with COVID-19, ventilators, and chronic illness.

(38:00) Section B – serious questions to ask ourselves if we want to be put on a ventilator during this COVID crisis:
https://nyti.ms/3bS9h6I (Dr. Kathryn Dreger, NYT)
* what do I value about my life? (This is the usual question.)
* if I will die if I am not put in a medical coma and placed on a ventilator, do I want that life support?
* if I do choose to be placed on a ventilator, how far do I want to go? Do I want to continue on the machine if my kidneys shut down? Do I want tubes feeding me so I can stay on the ventilator for weeks?

Section B: Has a “request transfer to hospital – only if comfort needs can’t be met in current location” box. Mainly only applies to nursing homes.

(40:16) Section B: In “Additional Orders,” could say “no ventilator passed 14 days,” “no antibiotics,” “no transfusions.” (This is not always given the weight other things on the POLST are given as these aren’t physician’s orders.) Could write in COVID-specific info here.

(40:50) Section D about advance directives. Patient can orally designate a healthcare surrogate. And “specified orally” can be written on form.

Section C about tube feeding: Has been removed from some POLST forms as it’s not an emergency. But it is important for advance care planning. If you leave anything blank, the default is aggressive care.


POLST Best Practices:
* should be voluntary (Shouldn’t be required for facility placement.)
* not indicated for all patients
* should be re-visited when there is unexpected or significant change of condition
* can be voided by patient at any time
* surrogate decision-makers can void or chance a POLST when circumstances change. (HCP should be involved in discussions.)

POLST is not just a check box form. It memorializes a CONVERSATION!


Pre-hospital DNR form (CMA form) is still recognized. Only relates to CPR. Requires both patient and physician signatures.

Key elements in conversations (from the HCP perspective):
* openness to talk, listen, and trust
* preferences for info and family disclosure
* understanding of their illness
* life goals, including upcoming milestones
* fears and anxieties
* unacceptable states of health, function, or tradeoffs
* not locked in forever to decisions you make today

COVID Conversations that HCP can be having with their patients: (VitalTalk, Ariadne Labs, CAPC, others)
* “Is it OK if we talk about what’s important to you and how the new coronavirus might affect you, so we can be sure we can give you the kind of care you’d want if you got the virus? This conversation can help your family and help us, your healthcare team, if that ever happened. This is a gift to us.”

If OK, then ask:
* “What do you (patient) know about the coronavirus?”
* “What can you tell me about your other medical conditions and how they affect you?”
* “Have you thought about what might happen if you were to get this virus? Do you have any specific fears about it?” (Some people are afraid that there might not be enough ventilators. Some people are afraid that they might be sent to the hospital.)

Then say:
* “It can be difficult to predict what would happen if you got the virus, already being at risk from your [medical conditions]. Many patients get mild cases, and I hope you would be one of them, but I’m worried that you could get very sick quickly, and I think it’s important for us to prepare for that possibility.”

(48:50) Great decisions aids on CCCC website: CPR, artificial hydration, tube feeding, ventilator. Non-value laden. CPR in frail, elder population is not effective but the aid doesn’t say this in that exact language. These aids DO NOT convince people not to have treatment that they are entitled to.

(50:34) Transfer/treatment decisions:
* risks of going to hospital are greater than they usually are because of the virus
* even without COVID, preferable to treat patients in “lowest” safe care location (home, SNF, assisted living)
* issues around access to family visits may influence choices of location to receive care


Managing documents: (photocopies, faxes, and scans are just as valid as original)
* give copy to healthcare agent
* make copies for other loved ones
* discuss with provider/doctor/hospital and place in medical record
* keep a copy
* bring for hospital admission

Person can always revoke directive or appoint a new agent. Best practice is to execute a new document.

If you already have a POLST, review it in light of COVID.

(53:00) Questions and Answers:

Q: How are prescriptions for self-administered medications (with EOL option act) affected?

A by Karl: Probably can’t be used for those with a positive COVID test (since the person won’t likely be alive after 2-week delay). Pharmacies still filling RXs. Doctor visits can be done via telemedicine.

Q: Chances of getting off of vents with COVID?

A by Karl: Probably 30-50% of elders are getting off of vents. Better in the younger population.

Q: If person has a POLST and they are moving to a SNF, is the POLST still good without ombuds signature?

A by Karl: Yes, unless the person wants to change his/her surrogate.

Q: Notary during COVID?

A by Judy: Notaries meeting in parking lots with person in car. Notary has hand-sanitizer and gloves. CCCC is working with state on remote notaries. Docu-sign works for a remote signature. CCCC asking for HCP to honor documents even if not properly witnessed.

A by Karl: Do a video. Not legally-binding but compelling. There are mobile notaries ($40).

(57:27) Q: How can HCP respond to questions about long-term effects of COVID on pulmonary or neurologic systems?

A by Karl: Data being collected now. We know some have chronic disabilities after ARDS (acute respiratory distress syndrome). If elder is already de-conditioned, coming off a vent is very hard and people come off even more de-conditioned.

Q: Can POLST be done via telehealth?

A by Judy: Doctor can sign and note that these are verbal orders that were discussed with patient or surrogate.

A by Karl: “Verbal consent given. Pending signature post-COVID.” Have two people sign as witnesses to MD signature.

Q:  (unknown – question not stated)

A by Judy: CCCC can share probate code for naming a surrogate verbally (if person is going into a care facility).

Q: What determines capacity to make own medical decisions?

A by Karl: If you can understand choices, appreciate differences (and consequences), express your choice, and express your reasoning, then this is what’s required. Ideally, the person says the same thing consistently over time.

Q: What if “do not transfer” box isn’t checked?

A by Karl: If “do not transfer” box is not checked, you go to hospital for any treatment you normally go to the hospital for. If you check box, you want to be treated in place unless your comfort needs can’t be met. Example – person is unconscious with low blood pressure (60/40), this person isn’t sent to hospital as the person is perfectly comfortable.

Q: Always put in coma (sedated) if put on vent?

A by Karl: Normally, yes. Very uncomfortable to be put on a vent. Part of weaning includes lightened sedation.

Q: Do you recommend a pre-hospital DNR?

A by Karl: Use the POLST.

Q: Photographs (on phone) of POLST?

A by Karl: Yes, valid.

Q: Photographs of ACD?

A by Judy: Yes, valid. Copies are valid.

Q: Don’t notaries require a thumbprint?

A by Karl: This is being waived. This is not a legal requirement but a “practice.” Get neighbors to sign in your back yard, if you can’t get a notary.