Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

You don’t know what your patient’s end-of-life wishes are

Lauge Sokol-Hessner, MD
Physician
February 16, 2018
Share
Tweet
Share

As I walked in the room, I noticed it immediately: Norman was worse. The recurrent invasive cancer in his neck was impairing the drainage of fluid from his face making it difficult for him to turn his head, and it had progressed overnight. Despite his alarming appearance, he seemed calm.

There were no more cancer-specific treatment options: the surgeons had declined to operate again; he had received maximum dose radiation; and the risks of chemotherapy outweighed any potential benefits. His pain required doses of opioids high enough that he often fell asleep in the middle of conversations. Because of his tracheostomy, Norman communicated by writing. Sandra, his wife of 63 years, spent two hours each day traveling to and from the hospital to keep him company.

As he worsened, I wondered why Norman had not chosen hospice or to forgo attempts at resuscitation. He was going to die from his cancer, but unless he changed his mind, I feared that one day he would develop pneumonia, transfer to the ICU or suffer the trauma of invasive catheters or CPR. I worried about the judgment of my colleagues who might feel I had neglected my duties and failed to “get a DNAR” or enroll him in hospice.

When I learned that Norman was hoping for a miracle, I asked him if he had considered what he might do if one didn’t occur. He wrote, “I’ll just have to deal with the cards I’m dealt.” In response, I found myself speaking bluntly. When Sandra asked about a second opinion, or about seeing the surgeon again, I said, “I don’t think those will help. And I’m worried that if he gets sicker, he might receive treatments that could cause more harm than good.”

I tried persuading them to reconsider hospice, emphasizing the positives: he could continue to receive care closer to home. But they wanted more time to think about it. I rotated off service and exhorted my oncoming colleague to re-address the issue.

Instead, a few days later, Norman was transferred to the intensive care unit for atrial fibrillation and acute respiratory distress. He stabilized, declined hospice again and was discharged to a rehab in accordance with his wishes.

Then one day, he was found unresponsive. CPR was begun, and he was rushed to a local hospital, where he was pronounced dead.

When I heard, the slap of failure stung. Could I have done better? Should I have pushed them to agree to a DNAR order? What could I have done to help them see the benefits of hospice? Would his family or others judge me and our health care system for providing suboptimal end-of-life care?

As it turned out, we had been judged, just not in the way I had feared. A palliative care physician who had followed Norman called Sandra to offer his condolences, and she reflected on her husband’s care:

He’s at peace now, and we should be happy for that, because he was suffering for a very long time, and there was nothing anybody could do to stop the cancer from progressing. He didn’t have his miracle, but he sure was determined. Well, I was married to him, and that’s the way he was, always very determined. It was a sad ending for someone who was so very, very loved. And definitely, absolutely, he knew he was very, very loved. I kept reminding him of that and Linda, his daughter, kept reminding him of that … [the hospital spiritual care professional] called earlier, that was so nice, and she gave me the address to use so I can send a card to the hospital staff thanking them for taking such good care of Normy.

As I read her feedback, it dawned on me: Norman’s choice was not his failure of understanding or our failure to be convincing. Instead, it was a choice to receive exactly the end-of-life care he wanted: keeping his mind engaged, spending time with Sandra and basking in the love that surrounded him for as long as possible. For Norman, declining an attempt at resuscitation or enrolling in hospice would have been in direct conflict with his determined nature. Forcing those choices on him would have been disrespectful.

We often hear that good end-of-life care means being at home, on hospice or declining attempts at resuscitation. Indeed, at a population level, those choices seem to be correlated with better end-of-life experiences. But at an individual patient and family level, it is more complex.

To improve care at the end of life, we must learn what matters most to our patients. What are their goals, values, preferences? What are their hopes and fears? What trade-offs would they be willing to make for the chance of more time?

ADVERTISEMENT

But learning what matters most to our patients isn’t enough; we must also learn about what matters most to us as health care professionals. When we assume our patients and their families share our values and that we know what is “right” for them, we impair our ability to be reliably respectful.

It is impossible to rid ourselves of all biases, as that would require relinquishing our own goals, values, and preferences. Instead, we must discover and understand our biases so that we can remain centered on the patient. Why did I feel so strongly about hospice and a DNAR order? What were my goals and values? What harms did I anticipate, and how did they compare to the harms Norman and Sandra anticipated?

Now, when making decisions, I ask different questions: How can I become more aware of the patient’s and family’s perspective? How can I ensure that they have the opportunity to make informed decisions? How can I avoid imposing my values?

Perhaps most importantly, I find myself reframing my definition of success in end-of-life care: Success is when I am confident that the patient’s care was consistently aligned with whatever mattered most to him or her, regardless of whether it fits the stereotype of “good end-of-life care.”

Lauge Sokol-Hessner is an internal medicine physician.

Image credit: Shutterstock.com

Prev

3 bad financial habits for doctors

February 16, 2018 Kevin 0
…
Next

Why are there vending machines in hospitals?

February 16, 2018 Kevin 13
…

Tagged as: Hospital-Based Medicine, Palliative Care

Post navigation

< Previous Post
3 bad financial habits for doctors
Next Post >
Why are there vending machines in hospitals?

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

Related Posts

  • More physician responsibility for patient care

    Michael R. McGuire
  • The triad of health care: patient, nurse, physician

    Michele Luckenbaugh
  • The ultimate in patient empowerment: advance care planning

    Patricia McTiernan
  • Building a bond of trust between patient and physician

    Michele Luckenbaugh
  • Patient care is not a spectator sport

    Jim Sholler
  • Why health care fails to deliver better value in patient care

    Kristan Langdon, DNP and Timothy Lee, MPH

More in Physician

  • How doctors took back control from hospital executives

    Gene Uzawa Dorio, MD
  • How art and science fueled one woman’s path to medicine

    Amy Avakian, MD
  • In a fractured world, Brian Wilson’s message still heals

    Arthur Lazarus, MD, MBA
  • Why being a physician mom is harder than anyone admits

    Cynthia Chen-Joea, DO, MPH
  • Removing vaccine advisers could jeopardize lives

    J. Leonard Lichtenfeld, MD
  • Why would any physician believe that the practice of medicine will become less abusive for them in the future?

    Curtis G. Graham, MD
  • Most Popular

  • Past Week

    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How medical culture hides burnout in plain sight

      Marco Benítez | Conditions
    • How the 10th Apple Effect is stealing your joy in medicine

      Neil Baum, MD | Physician
    • Why flashy AI tools won’t fix health care without real infrastructure

      David Carmouche, MD | Tech
    • Why Medicaid cuts should alarm every doctor

      Ilan Shapiro, MD | Policy
    • Key strategies for smooth EHR transitions in health care

      Sandra Johnson | Tech
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • How dismantling DEI endangers the future of medical care

      Shashank Madhu and Christian Tallo | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How scales of justice saved a doctor-patient relationship

      Neil Baum, MD | Physician
    • The broken health care system doesn’t have to break you

      Jessie Mahoney, MD | Physician
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
  • Recent Posts

    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Earwax could hold secrets to cancer, Alzheimer’s, and heart disease

      Sandra Vamos, EdD and Domenic Alaim | Conditions
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • Why health care must adapt to meet the needs of older adults with disabilities

      Lynn A. Schaefer, PhD | Conditions
    • How doctors took back control from hospital executives

      Gene Uzawa Dorio, MD | Physician
    • Improving patient encounters: time-saving strategies for physicians [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 2 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

  • Most Popular

  • Past Week

    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How medical culture hides burnout in plain sight

      Marco Benítez | Conditions
    • How the 10th Apple Effect is stealing your joy in medicine

      Neil Baum, MD | Physician
    • Why flashy AI tools won’t fix health care without real infrastructure

      David Carmouche, MD | Tech
    • Why Medicaid cuts should alarm every doctor

      Ilan Shapiro, MD | Policy
    • Key strategies for smooth EHR transitions in health care

      Sandra Johnson | Tech
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • How dismantling DEI endangers the future of medical care

      Shashank Madhu and Christian Tallo | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How scales of justice saved a doctor-patient relationship

      Neil Baum, MD | Physician
    • The broken health care system doesn’t have to break you

      Jessie Mahoney, MD | Physician
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
  • Recent Posts

    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Earwax could hold secrets to cancer, Alzheimer’s, and heart disease

      Sandra Vamos, EdD and Domenic Alaim | Conditions
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • Why health care must adapt to meet the needs of older adults with disabilities

      Lynn A. Schaefer, PhD | Conditions
    • How doctors took back control from hospital executives

      Gene Uzawa Dorio, MD | Physician
    • Improving patient encounters: time-saving strategies for physicians [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

You don’t know what your patient’s end-of-life wishes are
2 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...