Talking with patients about their impending death

by Brad Stuart, MD

The emergency department phoned my office right before lunch.

I was on call for our general IM group, so when I was done with my morning schedule I walked across the street to the hospital. Greg, my partner’s 38 year old patient, was a woodworker admitted with fever, chills, cough, a sharp pain in his right side, and a WBC of 18,000. On the chest x-ray, I saw what I expected: a right middle lobe infiltrate. What I didn’t expect were the massive lymph nodes bulging between his lungs, pushing them outward into his chest wall.

“Has anyone mentioned lymphoma to you?” I asked Greg. His face was gaunt, the pallor of his cheeks contrasting with his red flannel shirt.

“Yeah, I’m pretty familiar with lymphoma,” he said. “I’ve had all the radiation therapy my chest can take. My oncologist just told me we need to start on another chemotherapy regimen. This’ll be my third. The first two didn’t shrink the tumors.”

“OK,” I said. “Are you ready for more chemo?”

“I don’t know,” Greg said. “If the first two didn’t work, is this one going to do any better?”

“Maybe, maybe not,” I said. “But it sounds like you’ve thought about that.”

“Yes, I have,” he said.

We looked at each other.

“You have a small pneumonia,” I said. “I can give you a prescription for antibiotics that will help, assuming your air passages aren’t closed down by the tumors. But curing your lymphoma may not be so easy.”

“That’s what I’ve been thinking,” said Greg.

A moment of silence.

“How do you feel about that?” I asked.

“Not great,” he said. “Actually, I’m scared as hell.”

We talked. As it turned out, Greg realized he was probably going to die. He had not mentioned this to anyone, least of all his doctors. He was frightened, but overshadowing this was his dread of going through more treatment. I told him all the decisions were up to him, and that he should talk them over with his oncologist and his primary care physician, my partner. The whole conversation took about ten minutes.

“I have to get back to my office,” I said finally.

“One thing before you go,” said Greg. “I’ve had four different doctors for the last two years, but you’re the first one who’s talked to me about how I feel.”

“That’s a shame,” I said. I knew each of his doctors. They were good clinicians. But all of them were more comfortable with the technicalities of diagnosis and treatment than they were with their patients’ emotions.

“It’s a shame all right,” said Greg. “But now that I’m clearer about my feelings, I think it’ll be easier to make up my mind about what I want to do. Thanks.”

“It’s a pleasure,” I said.

The next week my partner told me that Greg had decided on hospice. He lived for three months, then died comfortably at home.

Talking with patients about their impending death is never simple. However, it’s easier if it’s done with a certain kind of love. This love is related to compassion, the willingness to suffer along with another human being in pain. A quiet joy can emerge when people suffer together like this. Medical training seems to have little to say about death, and even less to say about this kind of love.

Common wisdom tells us that the opposite of love is hate. But that’s only true on the surface. Love and hate are two sides of the same coin, the coin of attachment. Humans are just as attached to the people they hate as to the people they love. Either way, they just can’t stop thinking and talking about each other. Look at the world of politics.

In reality, the opposite of love is fear. Whereas love connects us, fear cuts us off from each other. Fear fosters abandonment, which can take many forms. Some are more obvious than others, but all are damaging.

At times we abandon our patients by ignoring or rejecting them. More often, paradoxically, we abandon them to further treatment, treatment that may or may not extend their lives, never thinking to ask them how they feel about it. High costs can accrue from this thoughtlessness. These costs are not just economic, but emotional and spiritual as well.

We need both delivery system reform and reimbursement reform in the US. Our financial incentives need to be realigned. But when our patients near the end of life, a deeper incentive calls. This call comes from love. This love, if we truly align with it, is strong enough to cancel out fear. This love helps us accept together what we can’t overcome alone. We must heed this call, because even though it may summon us to witness terrible grief and loss, when we respond to it everyone has a chance to win.

Ultimately, this deeper kind of love really has no opposite. There is nothing in this world that compares to it. It encompasses everything in life, including death. May we listen carefully for its quiet and constant voice.

Brad Stuart is a palliative care physician who blogs at GeriPal.

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  • http://www.LifeQualityInstitute.org Lindsay

    Hi Dr. Stuart,

    Great post and great reminder to us all. I posted a blurb from the post on our blog and linked back to you. I think this is something everyone should remember. Thanks so much for your transparency.
    http://www.caringchatters.blogspot.com

    Lindsay

  • Primary Care Internist

    great post.

    So often i’m reminded that being direct and honest with patients is so rare, and often goes a long way in establishing credibility. And that approach certainly does NOT preclude compassion.

  • http://blogs.vnsny.org/ Jeff J.

    Thanks Dr. Stuart for this well written post. Just as it can be easy to for our patients to get lost in medical jargon, health care professionals can get lost as well and lose sight of providing compassion.

  • http://www.parenttalktoday.com Kathy Sena – Parent Talk Today

    Terrific post, and something that needs to be discussed a lot more often and more openly. I shared this on my FB page and I hope it will cause people there to talk about it, too. Thanks. My mother-in-law made the decision to stop treatment and enter hospice and looking back, it was the right decision for her. But it wouldn’t have happened if she wasn’t able to have honest discussions with her doctor about these issues.

  • Susan

    Lovely post. My husband died 2 years ago from pancreatic cancer and none of his doctors had this talk with him.All relaying of bad news and discussion of end of life issues were left to me[I'm a nurse and knew the docs very well]. It was a difficult role for me to play whilst trying to support him and our youngish children and also keep myself together. You are so right that the opposite of love is fear.

  • http://turnyourheadandcoughMD.blogspot.com Max Power

    It seems as if sometimes our society views that our goal should be to avoid death at all costs. I disagree. I think that many times, the cost to “avoid death” is too great on both the patient, the family, and society at large.

    While I don’t advocate anyone making that decision except the patient together with advice from the family, and physician, I do believe that we need to be more willing to approach subjects like this.

  • Gerry

    Dr. Stuart, thank you for your post. It is a profound reminder that we are first human beings, second physicians. Your patients are blessed to have you. And so is your family.

  • Just Me

    This is so very important. Why are so many Americans unable to discuss it? All the fear-mongering over “death panels” – can’t we speak to each other like adults? There is a wonderful article on the same subject in the 8/2/10 New Yorker. It should be required reading for every member of Congress and anyone active in politics. Dare I suggest it to Fox News?

  • Molly Ciliberti, RN

    Thank you for being there for Greg and giving him the opportunity to talk about how he feels. Doctors and nurses are in caring professions, we provide love and care for our patients especially when we give them the opportunity to tell us what they fear and what they want.

  • http://nursebrittney.blogspot.com/ Brittney

    I am glad that you are sharing this with us.
    So often I encounter patients whom the physician has told them the facts in medical terms, but not broke it down the patient and point blank discussed their death, and what the patient wanted to do.
    I also, unfortunatly very often, have families that know the impending death of their loved one and refuse to allow the medical staff to discuss this information with the patient.
    I think that it is our duty to let the patient and family know the truth, know we care, and help them make any choices they need without giving our opinion and being as open and compassionate as possible.
    I only wish every Doctor would handle this situation in the way you did.
    Thank you.

  • http://www.drjohnm.blogspot.com DrJohnM

    Congratulations on a beautiful post.

    Choosing more chemo, more procedures, and more devices is not the only choice that patients should be offered.

    It is surely easier to install an ICD than to discuss impending death with a patient. But we should.

    My wife, a palliative care doctor, tells me that we should ask patients whose death is approaching, how they would like to spend their remaining days-weeks-months. Is their goal to maximize their days, or their comfort. If presented as described in your piece, with compassion and genuineness, many patients will choose the latter. And paradoxically, stopping such life prolonging medicines, like digoxin and statins, and surely chemo, may actually extend their days.

    Thank You.

  • http://secondbasedispatch.com Jackie Fox

    Dr. Stuart,
    This was so moving and you told it so beautifully. I’ve often thought this has to be the worst part of a doctor’s job. God bless you for your compassion and kindness. Your phrase “the opposite of love is fear” is going to stay with me for a long time.

  • http://evimedgroup.blogspot.com Marya Zilberberg

    This is a wonderful post, thank you! The attachment to our gadgetry and being right often goes along with the fear. And I agree, our training has lost the human touch of compassion and that kind of love.