A doctor discovers an important question patients should be asked
This patient isnāt usually mine, but today Iām covering for my partner in our family-practice office, so he has been slipped into my schedule.
Reading his chart, I have an ominous feeling that this visit wonāt be simple.
A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.
He suffers from both congestive heart failure and renal failure. Itās a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.
Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I canāt blame him.
Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.
With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.
After 30 years of practice, I know that I canāt possibly solve this manās medical conundrum.
A cardiologist and a nephrologist havenāt been able to help him, I reflect,so how can I? Iām a family doctor, not a magician. I can send him back to the ER, and theyāll admit him to the hospital. But that will just continue the cycleā¦ .
Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that itās useless to try.
Then I remember a visiting palliative-care physicianās words about caring for the fragile elderly: āWe forget to ask patients what they want from their care. What are their goals?ā
I pause, then look this frail, dignified man in the eye.
āWhat are your goals for your care?ā I ask. āHow can I help you?ā
My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.
He wonāt ask me to fix his kidneys or his heart, I think. Heāll say something noble and poignant: āIād like to see my great-granddaughter get married next spring,ā or āHelp me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.ā
His daughter, looking tense, also faces her father and waits.
āI would like to be able to walk without falling,ā he says. āFalling is horrible.ā
This catches me off guard.
But it makes perfect sense. With challenging medical conditions commanding his caregiversā attention, something as simple as walking is easily overlooked.
A wonderful geriatric nurse practitionerās words come to mind: āOur goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.ā
Suddenly I feel that I may be able to help, after all.
āWe can order physical therapy ā and thereās no need to admit you to the hospital for that,ā I suggest, unsure of how this will go over.
He smiles. His daughter sighs with relief.
āHe really wants to stay at home,ā she says matter-of-factly.
As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.
āI know that youāve decided against dialysis, and I can understand your decision,ā I say. āAnd with your heart failure getting worse, your health is unlikely to improve.ā
āWe have services designed to help keep you comfortable for whatever time you have left,ā I venture. āAnd you could stay at home.ā
Again, his daughter looks relieved. And he seems ā¦ well ā¦ surprisingly fine with the plan.
I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable ā at home.
Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. Itās somewhat hard on his wife to have him die at home, she says, but heās adamant that he wants to stay there.
A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.
The nurse confirms that he is near death.
I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?
Two days later, and two months after we first met, I fill out his death certificate.
Looking back, I reflect: He didnāt go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.
Several months later, a new name appears on my patient schedule: Itās his wife.
āMy family all thought I should see you,ā she explains.
She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and sheās lost some weight. No, she isnāt depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.
āHe liked you,ā she says.
Sheās suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.
āThey were just doing more and more tests,ā she says. āAnd I wasnāt getting any better.ā
Now I know what to do. I look her in the eye and ask:
āWhat are your goals for your care, and how can I help you?ā
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