Medical Ethicist Abbott, MD walks us through her perspectives on myriad ethical quandaries including: How to approach discordance between a patient’s written wishes and a family member who says do the opposite, the ethics of operating on demented patients who have an acute life threatening critical illness, a case of a young man with an unsurvivable brain bleed and whether or not to extubate him before the family enters the resus room, strategies to skillfully guide families through withdrawal of life support, and the real consequences of restrictive hospital visitation policies.
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Guest Bio: Dr. Jean Abbott is a medical ethicist and faculty at the Center for Bioethics and Humanities and Core Faculty, Master of Science in Palliative Care, University of Colorado Health Sciences Center. She is also Professor Emerita University of Colorado School of Medicine, and 30 year veteran of the emergency department. Not part of her CV but germane to this show…she was my attending when I was a resident in the 1990s and had a profound impact on who I became as a physician. Irreverent, quick witted, and a tireless patient advocate, she is one of the finest physicians I have ever known.
Visitor policy– one of the enduring tragedies of the COVID-19 pandemic;
- In the beginning of the pandemic when we had little understanding of how the virus spread, the first reflex was to close down. Visitors were not allowed into hospitals, EDs, nursing homes, etc. Initially, some people might have been relieved; they could focus on just doing their work. But as the dust settled, that has proven to be problematic in ways that were not expected.
- Banning visitors has major detrimental effects in acute care. You don’t have somebody to speak for the patient, share their story, help us understand things that the patient may not be able to convey. Visitors are members of the team and their voice is important.
- In nursing homes, people with dementia have had a downhill trajectory with a far steeper slope than it would be if engagement with family and the outside world had been allowed. People were dying faster – deaths of loneliness.
- As we gained a better understanding about the virus, rules changed far too slowly.
A case of a 45 year old with an unsurvivable brain bleed – Do you remove the endotracheal tube before the family enters the room to say goodbye or do you await their permission to extubate?;
- The treating physician felt that extubating the patient without permission rather than forcing the family to decide was the most compassionate thing he could do. Was this the right move?
- Dr. Abbott: “We sometimes think that we have to ask permission to do things, but the AMA Code Of Medical Ethics says that we’re not required to provide non-beneficial care. If what you are doing is not beneficial, you are allowed to do it in the way that you feel is best for your patient. If you’re not able to sustain life for the patient, then your patients are the family, and doing it gracefully for them is the best choice that you have. We do have to take leadership, and frankly to ask the family for permission to have the tube removed puts more of a load on them than perhaps they deserve to have.”
- Another option in this case would have been to leave the tube in as the family said their goodbyes and then inform them that the patient had a terminal, irreversible condition and the tube would be removed (without asking permission).
The struggle that society has with brain death;
- If a patient is brain dead, the patient is dead. But to the family who is looking at the heartbeat on the monitor, the patient may appear alive. Stopping medical care at that time can look like you’re killing the patient.
- Dr. Abbott and her team developed an algorithm which said that if a patient was declared brain dead, they would remove all life support in a ceremonial fashion with the family gathered around, because “it needs some kind of closure and action that helps bracket this patient’s life”.
Withdrawing and withholding care in the emergency department;
- The theoretical philosophical ethicists say that withdrawing and withholding are morally equivalent, but Dr. Abbott disagrees. “It feels different to withdraw something that’s been started than it does to never do it at all.”
- The ER is the classic place where we over treat, starting things that turn out to not be either beneficial or according to the patient’s wishes. We are working with insufficient information.
- It can be ethically superior to withdraw than to withhold. As we get more information, care can be withdrawn, explaining to the family that it was used as a bridge to buy time and make sure exactly where things lay.
One way to approach death disclosure;
- First, try to get a sense of where the family is (emotionally). Are there disagreements? Is there panic, sadness, etc?
- It’s your job to be in charge and to be calm. Bring the family into the room and explain that the brain/body is not going to recover. Encourage them to touch the body and say goodbye. If the patient is intubated, let them know that you will be removing the tube.
- Ideally, have a chaplain or a social worker in the room so they can spend the duration of time that the family needs. Before you leave the room, address any unanswered questions and let the family know you will try to return in the event that more questions arise.
Accommodating requests to delay death so family members can arrive to say their goodbyes;
- During the COVID pandemic, policy changed in Colorado. They do not have to do CPR. They do not have to delay pronouncing death. They ask for assent from the family for withdrawing the ventilator, but not consent. It’ll be interesting to see how this evolves as a new normal is reached.
- “In our culture, we value individual requests and wishes more than is good for society in general.”
The case of a minimally communicative, demented (but happy) patient with a subdural hemorrhage who was unable to provide consent to surgery and has no POLST;
- The neurosurgeon and ED doctor signed a consent form for drainage but the anesthesiologist protested. What was the right thing to do?
- There is a huge debate in the end of life community about what to do about contented dementia. In this case, there was no way to know the patient’s quality of life and to judge whether that was a joyful life. The right thing to do was to drain the subdural and give the patient’s body the best chance possible. You buy time until you can have a conversation with family and friends to determine the next move considering the patient’s best interests.
Reasons why we tend to over treat in the ED;
- For one, we often don’t know what the patient’s wishes are – we don’t have advanced directives, the advanced directives may not be pertinent here, we don’t have a POLST form, the patient changes their mind, the family insists the patient wasn’t answering the form correctly).
- Second, we don’t know what the outcome is. Will the patient get better from our treatment? If so, would this align with the patient’s wishes?
- The third reason relates to the tempo with which we need to intervene. Often we have to intervene before we have a chance to consult with family.
- In an emergency, we must err on the side of life if there is no clarity about the patient’s desires.
The scenario where the patient’s POLST form (eg. comfort measures only) and the desires of the power of attorney (do everything) do not align;
- A POLST form is the “Physician Orders for Life Sustaining Treatment”. The goal is to honor patient treatment wishes based on their current health condition, and they protect physicians from liability.
- The problem comes when POLST forms were written years ago, or when somebody overrules them, or when the circumstances change.
- In the ED, if the POA feels strongly that care should be provided, it can be reasonable to do so realizing that there are “exit ramps when the dust settles” and you are better able to prognosticate with additional information.
Priming families in the ED;
- One thing we can do in the ED is to prepare families for the important conversations that will happen while the patient is in the hospital. What brings their loved one joy in life? What is he/she suffering from? What has been the arc of his/her life?
The ethical thing to do when you can’t get informed consent from a patient;
- The ethical thing to do is to err on the side of life. You can explain to the family when they arrive that this was a time-limited trial to see how the patient’s body would respond, recognizing that you were unable to get informed consent at that time.
Navigating the “Daughter from California”;
- The “Daughter from California” describes a situation in which a long-lost relative arrives at the hospital at which a dying relative is being treated and insists that the team pursue aggressive measures to prolong life, or challenges the care the patient is being given. These people are often angry, articulate and informed. They are frequently surprised by the scale of the patient’s deterioration and may have unrealistic expectations about what is medically feasible. They may feel guilty about having been absent and may feel motivated to reassert their role as an involved caregiver.
- When the “daughter from California’ has an opinion that differs from the involved family members, more often than not this is a situation that will not be solved in the ED. This takes therapy and time. You may be able to temporize with minimally supportive treatment to buy time and involve your palliative and critical care consultants to sort out the issues with the conflicted family.
When does the medical Power of Attorney kick in?;
- The medical POA doesn’t kick in until the patient loses decisional capacity. If a patient is able to communicate with you and understands his/her choices, then she’s in charge. The power of attorney doesn’t kick in until that patient loses consciousness.
‘The nice thing about ethics is there’s no right answer. There’s a lot of discussion and there are different ways that different people approach things.”
-Jean Abbott, MD
Shownotes by Melissa Orman, MD