DO I NEED TO CHANGE MY LIVING WILL FOR COVID-19?

Living Will

 

Clients have been asking if they need to change their Living Will in the new age of Covid-19. There is a simple answer and more nuanced answer to this question, and it raises some very important issues.

The simple answer: You do not need to make changes to your advanced directive for coronavirus. A living will takes effect only if you are in an end stage condition, persistent vegetative state, or terminal condition. Covid-19 is not, in and of itself, any of those conditions. Therefore, a living will does not preclude treatment for Covid-19, including ventilator care.

The more nuanced answer raises another question: Is ventilator care a good choice? I do not know the answer to that question, even for myself. I read a great deal about this pandemic. As far as I can tell, there is not enough data to assess whether ventilators (or ECMO – extracorporeal membrane oxygenation, a type of heart-lung bypass) save lives, prolong death, or doom the patient to a miserable life with severely damaged lungs or hypoxic (reduced oxygen) brain injury. Some reports from health care providers say that most people die despite ventilator care. Some reports also include stories of people who survive despite weeks on a ventilator or ECMO. What I don’t see are stories from survivors about the quality of their lives after prolonged ventilator or ECMO treatment.

Then there is the issue of treatments for Covid-19. There are anecdotal reports about all kinds of possible treatments. Some kinds of treatment may work for an individual patient. Thus – how to know in advance whether prolonging life can allow treatment to work? How to know if a startling breakthrough will occur any day now?

Personally, I don’t think there is an easy answer to this dilemma. If you know you don’t want a ventilator under any circumstances, then you should execute a DNR. That is a physician’s order and, of course, must be signed by a physician. It is a form printed on yellow paper that is posted on the refrigerator (and, in this environment, I would execute 2 of them with one to be carried to a hospital). A DNR is not the same as a Living Will.

The next best suggestion is to discuss with your health care surrogate how aggressive you want to be in preserving life. What are the milestones you want your surrogate to consider if you cannot speak for yourself?

Do you want ventilator care if you arrive in an ER in respiratory distress (before diagnostic testing)?

Do you want to continue ventilator care after a given number of days?

Do you want to continue ventilator care long enough to try some kind of treatment? If so, how long do you want to try the treatment? And, how many do you want to try?

If your lungs are overwhelmed (a condition physicians often call “white out”), do you want ECMO, if it is available?

Do you want to preserve life in all instances, at any cost?

If want your surrogate to discontinue the ventilator, do you want aggressive comfort measures? Do you want this managed by a palliative care or Hospice physician? Is palliative care or Hospice even available in your hospital?

The ultimate question I think we all need to ask ourselves is have we made peace with this life? Is there anything left to do? Or anything left to say? If there is more to do, then my suggestion is get on with it, now. If there is more to say, then my suggestion is say it, now – no matter how difficult that may seem. The adage “live each day as if it were your last” seems especially poignant right now.

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Comments 5

  1. I have worked in hospice and palliative care many years and my wife is a hospice chaplain. This is one of the wisest articles I have read since this pandemic started- and I have read many. You will not be able to answer most of these questions until and unless you are smack in the middle of an unfolding situation personally, HOWEVER, to have thought through the questions and considered options BEFORE you are in a situation is just brilliant.Thank you so much for the challenge of facing hard stuff. My wife and I will have “the discussion” right now.

  2. This is very helpful information and prompts us all to take a good look at our end of life choices. As we all live in this new normal and survive living through a pandemic in our lifetime — one thing seems clear to me and is stated so well by Cathy — have you made peace with your life and are you living your best life? If there is more you need to do, get on with it. Yesterday’s the past, tomorrow’s the future, but today is a gift. That’s why it’s called the present (Bill Keane).

  3. Thank you for taking care of all this with us. We have commented several times during the quarantine that we are so glad all the decisions are done. Thanks again

  4. So grateful that you have asked so many good questions for people to consider in advance of needing to know the answers to the questions. Unfortunately, too many people don’t seem to want to ask difficult questions about end of life issues. As a pastor, I know this to be true too often. And families are then left struggling to know if they are making the right decisions. Living a good life includes having good conversations with your loved ones and close friends about what your choices are about dying.

  5. Great discussion topic, Cathy. As a retired Infectious Diseases and Hospice physician, I can affirm that the questions you pose are not unique to COVID, but to anyone contemplating the use of a ventilator in the course of their care for any condition. Many factors, including age, underlying health conditions, duration of symptoms before ventilator use, cause of respiratory failure, other organ involvement, etc, etc, factor into whether the use of a ventilator may be beneficial and/or successful. In general, the healthier you are and how soon in the illness the ventilator is needed lend to better outcome….if you need ventilator support early in the course of an infection, before medications have had a chance to work, then a ventilator may provide the bridge to improvement in the infection that would allow successful weaning off the ventilator. However, the myriad of possible scenarios involved with this decision precludes being able to comprehensively address all in one document. The bigger issue, in my experience, is not whether a ventilator is used….but when to withdraw the ventilator when it becomes futile. As such, specifying the number of days for a therapeutic trial of ventilator support in the advance directives would be helpful for the medical professionals and loved ones in making that decision. I have participated in numerous ventilator withdrawals at the end of life with hospice and can say that it can be a painless, comfortable process for the patient and loved ones. If the next question is “how many days is an adequate trial?” I can only respond with a timeframe for myself…that is 3-5 days. If no consistent improvement is noted in that timeframe, then I would want my HCS to direct withdrawal of ventilator support.

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