You see it coming. But then you’ve seen it before. The patient is living it. Looking from the inside out. First time walking this path. The obvious isn’t obvious from this side.
It would not be a surprise if this patient died within the next year. At least to anybody but the patient. That end part you can’t change. But the road from here to there? We need to talk.
End of life care to most physicians means the end. Death. So, we focus on the POLST or Advance Directive and congratulate our selves when one of those is completed. As if something was solved. Sometimes it is. But it assumes we will have a choice how the end moments play out.
So, with that assumption, the itinerary of final events needs to be addressed. Because the final event will happen. Often those actual details do not fit any of the scenarios presented in the advance directive discussions.
I have been through many conversations with patients and their families about death and dying. I lived through the Kubler-Ross fiction about the stages of death, defining for several generations a reality where there were often not stages, just a Muchian scream.
There are two documents which pertain to final event choices. These are the POLST and Advance Directive. They have discretely different purposes. It is important providers and staff presenting those to the patient or family understand this distinction. Because most patients, frozen in confusion and indecision, complete neither document. And no decision is a decision. It just eliminates the patient from that choice.
The POLST asks one pertinent question. Should resuscitation be attempted? A POLST should be reserved for those in the last phase of their life where the informed patient is clear no attempt at resuscitation is desired. Informed means the patient understands what resuscitation means, the probability of success, and what success means. Success means a return to the life quality prior to the event creating the need of resuscitation. And an opportunity to go through it all again.
Sometimes it is helpful to share probability. A large study, completed over 30 years of in-hospital CPR, involving patients aged 67 or higher, reported an average survival to discharge of 15%. Nursing home patients have a less than 2% survival with CPR. These are overall numbers. There is variability of outcome related to the presence of chronic conditions and the circumstances of their cardio or pulmonary arrest.
It’s important to share this reality because a recent study in the Emergency Medicine Journal revealed most of the public estimated the success rate of CPR as being more than 75% in all situations.
Ethics come to this place with a question: When is a rate of survival to hospital discharge so low that resuscitation should not be offered to a patient who requests it? 5%, 1%, 0.5%? Medical treatments that are futile are generally agreed to be unethical. And medical treatment is futile if its purposes cannot be achieved. The 2 major determinates of medical futility are length of life and quality of life. Any intervention that cannot establish increase in either of these parameters if futile.
In practice, this consideration often gives way to another ethical principal supporting patient choice. Is that morally correct or just the easier path?
The Advance Directive primary purpose is for the patient select a person(s) to make decisions on their behalf if that patient is unable to do so. Appoint a health care representative. I have found when this complicated form is simplified to this understanding, hesitation melts. Comfort is supplemented by the patient’s understanding that this document is invoked only when they are unable to speak. I then encourage patients to make their wishes known to that representative.
Now we move to the heart of the talk. 80% of Americans report they want to spend their last months at home rather than a hospital or other institution. However, only 24% of Americans over 65 dies at home. Somehow choices are hijacked by medical technology, boosted by unrealistic hopes of what we can offer them. Like CPR and life supports. We quickly pass over the line between prolonging life and prolonging death. Overlooking the ethics of truth undergirding informed consent.
So many of my elderly patients are consumed in worrying about events surrounding death. “Don’t worry about death”, I tell them. “Death will take care of itself. Worry about life. That is what needs management. What will you do with the time you have?”
Because we’ve watched lives of desperation, devoid of dignity or grace, involving endless ED visits and hospitalizations, for conditions that could not be changed and problems that would not be solved. Not every situation we face can be altered, but none of them will be altered until we face it. Time for the talk.
The essential components for this part of the talk are these:
Make Time. You’re probably not going to get through it in 20 minutes.
Invite the right people. Beside the patient, who are the influencers and problem solvers? Who has a power of attorney? Who has the best interests of the patient in mind? Would a community health worker or Pastor help?
Make space. The exam room may be a bit cramped for this.
Find out what the patient knows. What is their understanding of the health status and expectations? Listen carefully here. There is often a big disparity between your patient’s belief and reality.
Discover the patient’s goals. Help them to connect with their values. Often their concerns are more for those left behind.
Give the patient and family a kind but honest appraisal of the patient’s health and prognosis. The truth may hurt. But not nearly as much as avoiding it.
Explain what palliative care is. Acknowledging the inevitable. Addressing quality. Focusing on pain and symptom control, communication, planning, emotional and caregiver support. Removing the stress and preserving the dignity of everybody involved. As an aside, the patient often lives longer when prolonging life is no longer the goal.
In short order, you will understand if there is anything that can be placed in motion. There will be patients wed to unrealistic expectation of their own abilities to live independently and outcome. Don’t take it personally. It’s not your person to take. It’s easy to be philosophical about other people’s life and death choices. The intention is to have the discussion, not win it.
After gently confronting the patient with your forecast, your audience becomes those supporting the patient. Hopefully as the stress of difficult experience plays out, and reality instructs in words you don’t have, the patient becomes more amenable to your counsel.
But for now, you have sown the seed. That’s all you can accomplish today.
Time to move on.
Tim Powell MD