This content has been reposted with permission from Pallimed, a Hospice and Palliative Care blog, at www.pallimed.org. Pallimed is a forum for discourse, recent news and research, and freethinking commentary. Opinions expressed in these posts solely represent the views of the author, and are not to be constructed as representative of any academic institution or medical center associated with Pallimed or of Clinical Geriatrics.
What do the following patients have in common?
- A 45 year old man who has a 60 pack-year history develops lung cancer and is diagnosed at an advanced stage.*
- A 33 year old woman with post-traumatic stress disorder who has been drinking since the age of ten and develops fulminant hepatic failure.
- An 82 year old man ends up in the surgical intensive care unit after a self-inflicted gunshot wound three months after his wife of 60 years dies.
- The mother of a 55 year old woman with morbid obesity, obstructive sleep apnea, and pulmonary hypertension laments that the park nearby isn't safe for people to use.
All four patients are candidates for palliative care. All of them also have potentially preventable illnesses. When I see patients like this, I sometimes ponder their plight from a six-sigma perspective. From a societal, public health, and healthcare system standpoint, what were the six missed opportunities which could have helped ensure that the patient before me stood a chance to avoid their illness?** The healthcare system brings it's resources to bear too late. Is the patient with lung cancer a candidate for a tyrosine-kinase inhibitor? What are the benefits of pentoxifylline for the second patient? Should the third patient receive mannitol? Is the last patient a candidate for sildenafil? While not unimportant questions, at times it feels like rearranging the deck chairs on the Titanic. From day one of medical school, I had some sense of the importance of preventative medicine, but nothing has emboldened my advocacy for prevention more than my chosen career in palliative medicine.
Palliation and prevention aren't mutually exclusive, either. The patient with advanced lung disease who still smokes may have the goal of living long enough to make it to his son's wedding or to stay out of the hospital as much as possible. Thoughtful discussion of prognosis and disease trajectory may motivate him to finally move from the contemplation or preparation phase to the action phase of smoking cessation. The palliative provider can play a vital role in this type of tertiary prevention, even if it's just answering the question, "Why should I even bother at this point?" In some circumstances, prevention of disease may be impossible for the patient. The woman who lies comatose in the ICU after an intracerebral bleed may no longer benefit from blood pressure management. When the patient's son asks the question (with his own children present), "should we be concerned about our risk for something similar happening?" it should be recognized as a teachable moment.
April 16 is National Healthcare Decisions Day (NHDD). Advance care planning represents one important intersection between prevention and palliation. In serious illness, conversations between patients and physicians about the end-of-life correlate with several positive outcomes for patients and bereaved loved ones. While the conversations in this study occurred only months before death, this fits the mold of prevention: Taking action now to provide benefit later.
You may not have a serious illness. Your death probably isn't imminent. But catastrophic trauma or illness is still possible. You may not be able to speak fully to your wishes for or against specific interventions. You can still consider what you would value most if faced with a serious illness. More importantly, it's not too early to talk about it with your loved ones, especially the ones who would speak for you if you cannot speak for yourself. The NHDD site provides several helpful resources to facilitate this type of conversation as well as meaningful documentation.
To quote Ira Byock:
"I have an advance directive, not because I have a serious illness, but because I have a family."
When I meet with the family of a patient who cannot speak, I see it as my job to help families sort through the maze of options and align treatments with the patient's values. While this can be accomplished without any previous advance care planning, it's easier on all sides of the table if there has been open consideration of related topics by the patient before the illness. In a society that values autonomy and the right to self-determination, there's a palpable loss when the person under discussion doesn't have a voice. Advance care planning helps to mitigate this loss and brings your voice back to the table when you cannot speak. Like the patients at the beginning of this essay, I start to think of missed opportunities when advance care planning hasn't occurred.
by: Lyle Fettig, MD (@lfettig)
*Any resemblance to actual patients is purely coincidental, although I'm sure there will be resemblances. These scenarios are common, unfortunately.
**Not addressed here are issues of hereditary predisposition, personal responsibility, bad luck, or other causes which may be outside of our control.
