We are all Palliative Physicians

70% of us say we prefer not to die in a hospital. Yet, 70% of us die in hospitals, too often tied to a ventilator, on vasopressors, either unconscious or in distress.  

Last week, over one hundred physicians, nurses, and other health professionals gathered at the Feinstein Institute for a day-long learning session on Advanced Illness.  Some conferences add to what you know.  Once in a while, as in this case, a conference changes the way you think. 

Some of the take-aways are obvious.  Conversations about end-of-life care need to happen long before the patient arrives in our ED or in the ICU.  So we need to engage our community partners.  These encounters are hard to have in the office (with or without federal funding) and hard to have in the hospital, because they are emotionally stressful, because they take time we don't always have, and because we need better skills.  Additionally, advance directives don’t solve the problem.  Identifying a healthcare Agent is a good idea.  But what good is it, really, if the physician and his team lack the skills to guide the individual, respectfully and empathetically, through the difficult choices to be made, honoring the patient’s autonomy while providing clear professional advice?  And Living Wills are of little help, with their boiler-plate language which rarely squares with clinical reality: “I want to forego X, Y and Z…in the event that there is no reasonable hope of my recovery…”

Here’s the real crux of the issue.  Too often we fail to grasp the essential question.  And so, with the best of intentions, we ask meaningless, or even harmful questions:  “Do you want us to do everything?”…or this variant… “If your heart were to stop, what measures would you like us to take?”  At their core, questions like these ask “which do you prefer, Mr. Smith, life or death?”  This question and its variants, often asked in a vacuum, are unhelpful, confusing and distressing to patients and families.

How, as a medical community, can we do better? First, we must listen closely, and that includes listening to ourselves.  If we were the patient, would we sound like we care? And like we were making sense?   Second, we need helpful guidelines for end-of-life discussions.  I have excerpted below a standard reference in the field of Palliative medicine.  Not every discussion will be a fully formed family meeting.  But there are steps that must precede any discussion about the plan of care when cure is no longer a realistic goal.  (A training program for practitioners is just now getting underway at our Center for Learning and Innovation.)


Ultimately, we need to learn to move beyond harmful questions -- “Do you want everything done?” -- to dialogue.  What is most important to the patient?  Is it comfort?  Is it the ability to interact with others? Is it independence? Or is it another day or week of life, until a relative arrives or an anniversary happens or just because the person’s values are such that prolonging life even a little trumps all other considerations?  Given that death is not optional, the ultimate question is “from what you know, what kind of death would mom have wanted?” The answers simply can’t be obtained from a check-the-box kind of interaction.  They require conversation. The key point is that as health professionals, we don’t advocate death, and we don’t help patients chose death.  However, as death draws nearer, we have an obligation to learn what patients and families understand about the situation, fill in the gaps, engage the family about what matters to the patient, and then make clear recommendations about how to move from curative measures that wont work to comfort measures that will.    

Ms. Smith, I have conferred with our team of physicians.  It is clear that your dad’s heart, lungs and kidneys are failing and he is not going to get better.  Basically, we have three choices.  We could admit him to the ICU.  He may need a breathing tube and then probably a feeding tube.  When his heart stops, we could do “CPR,” which means pressing very hard on his chest and shocking his heart.  Sometimes ribs break when we do this, especially in frail elderly people like your father.  The odds are less than 1/20 that CPR would work at all, and even less that he would ever be conscious after that.  Almost certainly, he would die in the ICU with the tubes.  A different option is to elect “Comfort care” at this time, which means that we would focus on pain relief and medications to keep him from the discomfort of feeling short of breath.    There is a third choice, and that is to provide medical care that will not tie him to a machine, while treating what problems we can, without invasive measures.  It is still uncomfortable to be in a hospital bed, but not as distressing as the ICU.  This care could include fluids, antibiotics and other medications, as well as pain relief and attention to his comfort.  As doctors, we aren’t perfect at predicting exactly when death will happen.  It is possible that the ICU could prolong dad’s death by a number of days, or maybe not at all.  Based on what you have told us about his wishes, our recommendation is that we avoid the most invasive care.  I suggest that as he declines we protect him from CPR and from ICU care.  I don’t think either one is in his best interest.  I know these are never easy decisions. We are here for you and for your dad. How does this plan sound to you right now? 


Once a plan of care is established, it should not be disrupted casually, because a consultant has a different point of view, or accidentally, because the care team has not communicated the family’s wishes internally, or because multiple hand-offs have thrown a wrench into our efforts to provide well-coordinated care.  As patients decline and the end draws nearer it becomes more important than ever that we function not so much as a team of experts, but as an expert team.

We know that as physicians it is our role to help - this is our motivation and our defining characteristic.  This is also the principle of beneficence, and it stands arm-in-arm with the reciprocal obligation to avoid harm ("non-maleficence").  What this means, practically speaking, is that we should never feel compelled to offer interventions that in our judgment will not help, and most especially we should avoid these when they add to suffering.  Sometimes the pursuit of these principles will put us at odds with a family.  But there are those around you who can help, including our colleagues in the Palliative Medicine program, the Bioethics consultation service, and, finally, clinical leadership.

There is tremendous opportunity here.  I look forward to working with many of you - our exceptionally committed and talented physicians -  to spread information, skills and a new culture of caring that does credit to our institution and does right by the patients and families who depend on us.
  

Communicating about Withholding or Withdrawing Therapies and 

Shifting Goals from Cure toward Comfort, Dignity and Quality of Life

1. Establish the Setting
Review relevant information.	Patient's prognosis Outcome of therapy in question in this patient
Make sure the right people are there.	Patient's or surrogate's loved ones Staff
Find a comfortable, quiet location.	Places for everyone to sit Seclusion from others Ability of everyone to see and hear each other
Introduce the topic for discussion.	“I was hoping we could talk about the next steps in your care.”
2. Review the Patient's Situation
Elicit the patient's or surrogate's understanding.	“Can you tell me your understanding of what is going on with your medical situation?” “What have the other doctors told you about your dad's medical situation?”
Educate as needed.	“That's right, the cancer has spread. What that means is that although there are treatments to control the symptoms, we can't cure the cancer.”
3. Review Overall Goals of Care
Elicit goals from the patient or surrogate.	“Did you talk with Dr. Smith about what the goal of your treatments should be?”
Summarize to confirm.	“So it sounds like the most important thing is to make sure your father is comfortable.”
4. Relate Your Recommendation for Withholding or Withdrawing Treatment
Introduce the specific treatment to be discussed.	“Today I wanted to talk about what we should do if your breathing gets worse, including whether we should use a breathing machine.”
Ask about previous experience with the intervention in question.	“Has anyone ever asked you about being on a breathing machine?”
Describe the intervention in question and its benefits and burdens for this patient.	“Based on what we’ve talked about—the fact that this cancer isn't curable—the chance of being able to come off the breathing machine would be very low.”
State your recommendation.	“I recommend that if your breathing gets worse we don't put you on a breathing machine.”
Describe how you feel your plans are consistent with the patient's overall goals.	“The reason I think we shouldn't is that you said you wouldn't want your life to be prolonged if there wasn't a good chance of recovering to where you are now.”
Describe what treatments will be provided.	“We will use medicines to improve your breathing and comfort.”
5. Respond to Patient or Surrogate Reaction
Acknowledge emotions.	“It's hard getting to this point, isn't it?”
Is the recommendation consistent with patient's values and goals?	“How does that plan sound to you?”
Answer questions.	“I’ll be around if you think of things you want to ask me later, but are there questions can  I answer now?”
6. Summarize and Establish Follow-Up
Summarize.	“Good. So we’ll keep the antibiotics going and give you medicines if the breathing gets worse, but we won't put you on a breathing machine.”
Explain the next steps in treatment.	“We’ll plan on keeping you here in the hospital for the next few days and see how things go.”
Arrange for the next meeting.	“I’ll see you tomorrow on rounds. Please have your nurse page me if you need anything before then."