Does care fall short or go higher when the patient is one of our own?
It depends on who you ask: We, the medical team, believe we try hard for everyone, but go the extra mile when it’s one of our own. Perhaps to family/outsiders, we’re not doing enough.
A recent case illustrates this phenomenon: a gifted physician colleague, a new diagnosis of advanced cancer. Needs control as part of a coping mechanism: dictates therapies/testing/medications.
It was OK, from our perspective, because this is one of our own who had a clear understanding of the implications of each decision — we respect their autonomy. Then, things started going downhill: rapid progression, emboli, sepsis, multiorgan failure.
Now, the extended family arrives — people who were “not in the loop” because our patient was a private person. The spouse is blamed for keeping secrets, and we are accused, with vehemence, of not caring and of letting the proverbial ball drop. We are attacked for not understanding that one of our own should matter more than the sum of others.
We acknowledge their frustration, empathize with their sadness — a loved one is losing the battle. It is incurable, unfixable, and death — is inevitable. We are mourning alongside you. We wish we could make this better, cure it, reverse it, somehow buy more time.
But we cannot.
We offer our help, co-management with relevant specialists. Palliative medicine is involved, helping with pain and symptom management, but family overall feels the medical teams have failed, because this horrible incurable disease cannot be stopped.
They identify another center, “the very best place to go,” and demand an immediate life flight transfer, but our patient is critically ill … far too unstable for transport.
Impending intubation. Now, intubated. Pressures vacillating. In and out of a tachyarrhythmia. Not a candidate for invasive interventions.
Nothing we say will alleviate their grief, their sorrow because the hard conversations are not happening the way they need to.
Yet, the writing is on the wall. It’s lit up in neon, we all see it, but we don’t say it.
We whisper about it as a team.
The family rebuff efforts for deeper discussions beyond those which point blame for not curing this incurable disease. We know death is coming. We know it will be here soon.
I think they knew it, but maybe couldn’t hear it … not from us. And so, we can’t give this reality a voice. Meanwhile, the opportunity for this family to come together at this dire time — to share meaningful dialogue, say goodbye, and honestly, to simply love each other through this is lost.
It is a catastrophic abandonment of all the right things to do for dying patients.
This isn’t the time for recriminations or I-told-you-so’s, yet as a beleaguered team, how do we respond?
How do we cope, process, and handle the feelings these accusations bring forth? Who do we reach out to, apart from each other?
I believe my patient — a brilliant and insightful physician, really did know what was happening. I also believe the disease was taking its mortal toll. It reached a point where the suffering became so overwhelming, so desperately tiring, that it was understandably easier to leave it to family to run the show: there was a willing and able ringleader, fiery and passionate in their advocacy for the patient, and devoted in there against this backdrop of emotional devastation.
Maybe they did not want to face the fears of dying. Maybe they knew but refused to acknowledge it. Maybe they felt that even whispering it would give it too much power.
But was it better to be so anxious, angry, and fearful of loss versus allowing themselves to have help processing the impending loss and then the loss itself?
In the moment of truth, palliative medicine stepped forward to navigate this family through the hardest conversation of their lives. We spoke of our patient’s struggles, the complexity of his worsening incurable disease, and the incredible, devastating unfairness of it all, dying young in the prime of a career filled with promise. We spoke about who our patient was as a person: passionate, active, a true force; through their stories, we learn of the soft heart that was often hidden beneath a stern demeanor of the many kindnesses shared with colleagues and staff.
This is someone who fought the good fight; now time was running out.
We know death is not easy; it is unfair. Yet, one day we’ll all die — it’s an inevitable fact of life. Some of us will know from what others may find it sudden or unexpected. But what I know for sure: we cannot go on as a death-denying society. It is ignorant. It is foolish. And it’s unfair to us all – from medical teams to family to friends and patients.
We all deserve the chance to know the full truth of our situation and make decisions accordingly. Is there someone we need to say goodbye to? To ask forgiveness from? To thank? Is there something we need to handle so our spouse/partner will be stable when we die?
There is always something we can do. Our predilection for death-denying must change. And as medical providers, this is a professional obligation and a moral imperative. Education, outreach, enhancing public knowledge. Major media outlets must help: get us on the national stage. Allow us to educate, improve awareness, and be part of the dialogue.
Death denial is never effective because we will all die.
It is the natural order of things. We should live our best lives and do our best to leave a legacy of joy/peace in our wake. We can’t keep deferring the talk about advanced illness planning and end of life care preferences. When we are more open in our dialogues about living and dying, our conversations are more meaningful and provide the valuable tools to help those we leave behind cope with loss. So, let’s have more open conversations about death and dying with our patients, our friends, our neighbors. Let’s stop whispering, “no, not yet, not me.”
Patricia M. Fogelman is a nurse practitioner.
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