As I sit, penning the cases to be discussed for the Mills Lecture which will be given at the ACEP Scientific Assembly in Las Vegas, I am struck by a thought: the largest, most-needed element of health care reform was never discussed in the recent debate. This is the dilemma of what we do as death approaches.
EPs play a role in end-of-life care which should never be abdicated or minimized.
As I sit, penning the cases to be discussed for the Mills Lecture which will be given at the ACEP Scientific Assembly in Las Vegas, I am struck by a thought: the largest, most-needed element of health care reform was never discussed in the recent debate. This is the dilemma of what we do as death approaches. “Humanistic Care vs. Death Panel – Futile Care in the Emergency Department” will be the subject of our panel discussion and, though I haven’t the time to discuss all the ramification of end-of-life care in this column, I think I can bring some salient thoughts to the table. I have learned much from having been at the bedside of dying patients since the beginning of my medical school days.
I remember going in to speak to a family after a 72-year-old gentleman had a sudden cardiac arrest. After telling the wife that her husband’s heart had failed, she looked at me and said, “Well stick in another one.” She spoke as if these were oil filters which we kept in a box and could replace in five minutes. The knowledge gap between the average member of society and the medical community is becoming wider and wider. Very few people understand both the possibilities and limitations of the care that we can administer. There is a chasm between our potential to act and what is reasonable to do at any moment in time, and we must help patients and their families cross it daily.
Patients and their families are not looking for impartial presentations of objective facts. No one watching their father die wants to know about a sensitivity or specificity or any other various mathematical calculation of any therapy. They don’t want to know the theory of what might be happening. They want a realistic expectation. They are caught in the eternal Apollonian vs. Dionysian struggle to resolve the conflict within themselves about how to treat their loved ones. “Am I doing enough for Dad?” “Can I do more?” “What will everyone think of me?” These moments, these near-death conversations between the doctor and the family, are crucial. They don’t want science, they want direction. They are either explicitly or implicitly asking us, “Doctor, what would you do if it were your family member?” They are, I have found, asking more for absolution than advice. They need to have someone give them permission to let their loved one go.
This discussion tests our knowledge of the trajectories of disease. Where are we going with this treatment and what is likely to be the outcome? Beyond the science, we seek to find family views of how the loved one would want to live, and how the family would like to remember this dying family member. Combining the two allows the family to come to grips with the inevitable. Overarching all of this is the simple reminder repeated at Roman grave sites 2000 years ago: Memento Mori, remember you too shall die. Keeping this in mind will help the physician to treat pain, protect dignity and move the family to an understanding that all the technology on the planet does not change death as the final outcome for us all.
How should this be done? Experienced physicians use careful, probing questions. The question, “What would your mother have wanted at this time?” can do a lot to put the family’s efforts in perspective. Also, complimenting the EMS crew, their own doctor, and expressing that all reasonable efforts had been done is important. Families need to know that there is simply nothing more that we can do at this time. Remember that when someone dies, we have lots of patients. We have the patients themselves, the wife or husband, the siblings. That is why involvement of social services and ministerial services can, depending on the patient, be very important.
Who is to carry on this end-of-life discussion is another question. This duty should not be taken lightly. The resident and the junior staff benefit from standing quietly and watching the experienced clinician bring the family to this level of understanding. Science, knowledge and procedural skill are not at issue. To send a family member ad patres – to the Father – is a true function of a physician, not a technician. It is important that our residency directors realize that this ministration to the dying is an event requiring initial supervision as much as the performing of a spinal tap or the placement of a chest tube. We often denigrate such duties in the department, but helping families understand why useless therapies and medications will reduce the dignity of the ultimate death is crucial. End-of-life issues are not easy, but when these ministrations are performed with knowledge and compassion, we give support to both the living and the dead.
2 Comments
Dear Brother Henry,
Where do we go from here? Why does it still seem like I am having these discussions in a vacuum? I speak to my colleagues and remind them that we are NOT required to perform futile and aggressive interventions, and they look at me as if I have three heads….we have absolved ourselves of this most basic and most reverent moment of the true art of medicine-the art of dying. Why oh why have we forsaken this ultimate privilege by giving the decision to a lay family member in the midst of grieving? For God’s sake, if we can’t say ‘no, that isn’t appropriate, it isn’t what your mom/dad/sister/husband/whatever would have wanted and it won’t make a difference AND we will treat them appropriately and ENSURE they won’t suffer’ how can we possibly expect families to say this? Can someone please find out who stole our gonads and try to get them back?
Thank you…Sj
Dr Henry,
Right on, as usual!
I ask these questions. Did your loved one communicate with you about their final wishes? Can they feed themselves, take care of body elimination functions and do they interact with their enviornment in a meaningful way. If they were standing here with us, looking at their current medical state, would they want aggressive or life prolonging treatment to maintain them in this state (ie; progressive dementia)?
The people of North Dakota are very tuned into these issues, thirsty for discussion.
I ask the family if they desire my input regarding treatment options, and illness momentum over the last several years. Most appreciate these frank discussions. I tell that that what we do is unnatural, what is happening quite natural. I would agree with Dr. Johnson above, that we need to be a bit more paternalistic in this area. Thanks for sharing your keen perspective! Keep up the good work.