Hospice: Fear, Need, and Benefits

Somehow, in my case, I always thought they would make an exception.

– Epitaph on a tombstone in Philadelphia

Allow me to express my bias at the outset – I am a believer in the hospice movement.  Unfortunately, there is a great deal of misunderstanding and misinformation amongst both patients and physicians.  Some believe that hospice is only for those who are expected to die within hours or days.  Others believe that by choosing hospice a patient must forgo any active treatment of their disease.  Both of these statements are erroneous.  The problem is that different hospice organizations offer different levels of care.  Sadly, these differences are frequently determined by the reimbursement program from which funding is received, and is a variable of profit vs. nonprofit mission of the different organizations.  Hospice therapy is available as an outpatient adjunct that gives support not only to the patient but also to family members who act as caregivers. When the time comes, a transition can be made to inpatient treatment.

With all too great regularity I see patients and families opting to undergo painful and uncomfortable chemotherapy regimens for diseases where a ” good result” is measured in terms of days and weeks.  I don’t pretend to know the answers to all of life’s choices.  What I do know is that the choices people make are strongly influenced by the manner in which those choices are presented to them.  I realize that when patients are grasping the frayed edges of life, the hope for one last chance, one last miracle, is a strong aphrodisiac that compels them to try anything.  Perhaps some physicians are overly optimistic, afraid to “tell it like it is” for fear of confronting the patient’s mortality would remind them of their own.  Sometimes patients are given the stark proposal of chemotherapy or “nothing,” an offer severely and unfairly limiting the patient’s options.

It seems far too often we choose quantity over quality of life.  Is this something built into our genes, like the primordial fight-or-flight response?  Does the desire to live overwhelm all our analytical thinking and coerce us into making unsound decisions?  Or is it that we have not yet experienced the absence of a future and thus are unable to understand such agonizing despair?  Perhaps it’s a bit of all three.

In the discussion of chemotherapy I have often heard a common refrain, “Who am I to deny the patient?  Who am I to deny hope?” But hope is metaphoric with the diagnosis of a life threatening illness.  It is no longer biased by the calendar or measured by the number of days, but rather governed by the control of symptoms, the reconciling of relationships, and the appreciation of a sunrise, a sunset, or the touch of a loved one.  A physician’s job is to educate patients and be their advocate, to weigh benefits and burdens, to peruse guidelines in an effort to provide rational suggestions, and in all honesty, just be there for a fellow human being entrapped in the chaos of disease.  To me, this represents both the science and art of medicine.

Don’t mistake me for a therapeutic nihilist.  I believe that chemotherapy has helped millions of people, and continues to do so.  I also believe that there is a difference between the preservation of life and the prolongation of death.  Many of us make the mistake of not allowing family and friends faced with imminent mortality to discuss with us their fears and desires.  Attempts to broach these topics are often met by comments like “What are you talking about?  You will be fine soon.” Had our own fears not terminated these discussions, what might have we heard?  Based on my own experiences with dying patients, they need to be a reassured that we will remain with them and not abandon them.  They need to hear that while death is inevitable, pain can be alleviated and controlled.  They need the opportunity to discuss spiritual issues. They need help in the setting of the realistic short term goals, such as seeing a grandchild one more time, or the opportunity of saying goodbye to an old friend.  For as long as we insist on pretending with them that everything will be OK, we deny them the privilege of discussing these all important issues with us.  Given the fact that death is an inevitable part of life, it is remarkable how our society continues to try and bury it’s head when confronted with this reality.  Aside from depriving the dying from much needed comfort, we expend a tremendous amount of resources on what is not only futile but also harmful care.

This entry was posted in America, Death and Dying, Ethics, Family, Health and wellness, Medicine, Organizations, Thoughts & Musings and tagged . Bookmark the permalink.

2 Responses to Hospice: Fear, Need, and Benefits

  1. Corkywk says:

    Although not Hospice related, my experience does speak to your professional insights on how choices are influenced by the patient’s attending physician in charge. However my story of influence does not entail radical medicines or last gasp procedures, in fact the exact opposite is true. My encounter was with a progressive and for the times, brave and very forthright man of medicine. One, who In my opinion, was ahead of his time.

    In 2004, my father was rushed to the hospital after suffering a major stroke. By then, diabetes had already taken his leg and forced him on dialysis thrice weekly. Then came the mini-strokes (as the family came to call them) with this last one, major and crippling.

    At the hospital, his specialist addressed us at a family meeting. It was dire, partial paralysis and cognitive damage. When we asked his opinion, it was so contrary to the norm, so startling in its honest assessment that we were taken aback. Indeed gasping at the forthrightness of its implications. He talked of quality of life, for both his patient and for us as a family. Gave his professional opinion based on years of experience citing little hope for even partial, physical or cognitive recovery while warning us, further strokes were very likely.

    Then, quietly and with care, he offered a final solution. At first we thought him mad and were repulsed by his suggestion, leaving that meeting with demands of a better solution. But in the end and after many days of family deliberation we came to see that he was right. Not only right, but brave and humane in his suggestion. As the eldest in the family, the final decision was left to me. The toughest decision of my life.

    The choice I ended up making was to end my fathers suffering and my Mother’s as well who suffered everyday beside him. I made it because hope had played out and the time had come for the suffering to end. Am I ever haunted by my decision? Yes of course at times I am! After all, I’m only human. But for the most-part I am at peace with my decision in fact have rewritten my own will to include similar instruction should I ever find myself in my Fathers place.

    Two weeks after my fathers passing, a card of sympathy arrived, handwritten condolences from the physician. A heart-felt thankyou card from our family returned in kind. For without his bold, yet honest opinions, who knows how many more years of suffering we’d all would have to endure with the final ending remaining the same.

    A hard story to retell Jorge as you can imagine but one I feel that has lifted a personal burden by its first-ever telling. That was your influence Jorge as a professional man of medicine advocating humanity when hope no-longer exists. You gave me further peace that my decision, was the right one.

  2. Jorge Medico says:

    Thank you for sharing your very personal, and still painful story. I’m happy you found a doctor who showed compassion and honesty to you, your father and the rest of your family. End of life decisions are best made with family members when there is still time for discussion and input; sadly, this isn’t always the case. I applaud your bravery in dealing with this most difficult decision, and having the courage to make the decision that was right for your father, rather than the one that you might have opted for due to selfish reasons. I can feel your pain, having gone through a similar process with my parents. Be well, stay at peace.

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