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:
coalitionccc.org/wp-content/uploads/2013/12/CCCC_ACP_Conversation-Guide_June2014.pdf
You can also use the webinar as a guide in your conversations. The recording is here: (registration required)
register.gotowebinar.com/recording/1207588529342067969
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:
COVID-specific:
#1 – Given COVID, our preferences for ventilation and hospitalization should be discussed.
#2 – “What you should know before you need a ventilator”
nytimes.com/2020/04/04/opinion/coronavirus-ventilators.html
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)
General:
#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…
Robin
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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)
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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
Speakers:
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.
(1:40) JUDY THOMAS:
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)
coalitionccc.org/covid-conversations-toolbox/
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)
KARL STEINBERG
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)
(19:06) JUDY THOMAS
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
Witnesses:
* 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
(28:47) KARL STEINBERG
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.
(42:50) JUDY THOMAS
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!
(44:00) KARL STEINBERG
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
(51:58) JUDY THOMAS
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.
