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

Communication about prognosis and goals of care is still lacking

Alex Smith, MD
Conditions
October 14, 2013
Share
Tweet
Share

Advanced dementia is a terminal illness needing palliative care. Unfortunately, there is a great divide between this statement of the world as it should be, and the current reality of the world as it is.  Rates of pain and shortness of breath are high for patients with advance dementia.  Patients with advanced dementia often reside in nursing homes, and few nursing homes offer specialized palliative care services.

And, as we can see from an article in this month’s Journal of the American Geriatrics Society, communication about prognosis and goals of care is still lacking.

In this study, Elizabeth Mann and colleagues asked health care proxies (generally family caregivers) of nursing home residents with advanced dementia a series of open-ended questions about do-not-hospitalize orders.  Hospitalizing patients with advanced dementia is often (though not always) more  harmful, leading to potentially burdensome and painful interventions (feeding tube insertion, needle sticks, restraints). All decisions to hospitalize must be made in the context of the patient’s goals and the risks and benefits of hospitalization, and alternative, namely, ongoing treatment in the nursing home.

A do-not-hospitalize order is appropriate for a patient whose goals are focused on comfort and maximizing quality of life without returning to the hospital.  The health care proxy for every nursing home resident with advanced dementia should have a discussion about the goals of hte patient, the patients prognosis, and treatment options.

Dr. Mann and colleagues interviewed 16 health care proxies.  They found:

  • 10 nursing home residents had a do-not-hospitalize order.  None were on hospice.
  • Many did not understand what a do-not-hospitalize order meant.  Three thought they had placed a do-not-hospitalize order when they had not.
  • Many were not aware that their loved ones with advanced dementia would inexorably decline.
  • “Right now she’s not on physical therapy, which they took her off … She’s not walking … She used to walk.  So I would like to get her walking again.”

There was also some justifiable concern that a do-not-hospitalize order would mean do-not-treat.  Some people were concerned that the order may be too limiting — that there would be some situations where hospitalization would be appropriate, like for hip-fracture:

I could not imagine my mother  falling and breaking her hip and not going to the hospital … Because I think that would be very painful for her.  And [it] would be cruel.  And someone could say well what’s the difference between having pneumonia and not going to the hospital and breaking an arm and not going to the hospital.  And I don’t know that I can answer that except in my mind there is a difference …

We wrote about this exact scenario in a piece for JAMA Internal Medicine recently — an elderly women with dementia falls and breaks her hip, her advance directive states do-not-hospitalize, but her doctor and surrogate feel hospitalization and surgery give her the best chance of recovery of function and quality of life.

There are two issues here.  The first is the need for doctors to ascertain and document the degree of flexibility or leeway that patients give proxies for situations like this.  For example, “I don’t want to be hospitalized for any reason.  Period.  If I break my hip, just keep me  comfortable in the nursing home.”  Or, “Let my husband decide.  No one can predict for sure what will happen in the future.  Do I want to stay out of the hospital?  Yes, of course.  But I can’t say never.”

The second major issue is the suboptimal understanding of health care proxies of nursing home residents with advanced dementia about prognosis and risks and benefits of hospitalization.  In many cases, this misunderstanding results from a proxy-clinician communication failure.

Plenty of room for improvement.

Alex Smith is an assistant professor of medicine, University of California, San Francisco who blogs at GeriPal.

Prev

Acknowledge the human aspect of our medical experiences

October 14, 2013 Kevin 3
…
Next

Pediatric stroke is not uncommon

October 14, 2013 Kevin 1
…

ADVERTISEMENT

Tagged as: Geriatrics, Palliative Care

Post navigation

< Previous Post
Acknowledge the human aspect of our medical experiences
Next Post >
Pediatric stroke is not uncommon

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

More by Alex Smith, MD

  • Do you know what your staff is saying about palliative care?

    Alex Smith, MD
  • We are morally scarring our future physicians

    Alex Smith, MD
  • Let’s celebrate nurses by reining in patient satisfaction

    Alex Smith, MD

More in Conditions

  • What if medicine had an exit interview?

    Lynn McComas, DNP, ANP-C
  • Finding healing in narrative medicine: When words replace silence

    Michele Luckenbaugh
  • Why coaching is not a substitute for psychotherapy

    Maire Daugharty, MD
  • Why doctors stay silent about preventable harm

    Jenny Shields, PhD
  • Why gambling addiction is America’s next health crisis

    Safina Adatia, MD
  • How robotics are reshaping the future of vascular procedures

    David Fischel
  • Most Popular

  • Past Week

    • Why removing fluoride from water is a public health disaster

      Steven J. Katz, DDS | Conditions
    • When did we start treating our lives like trauma?

      Maureen Gibbons, MD | Physician
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Graduating from medical school without family: a story of strength and survival

      Anonymous | Education
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
    • My journey from misdiagnosis to living fully with APBD

      Jeff Cooper | Conditions
    • Addressing the physician shortage: How AI can help, not replace

      Amelia Mercado | Tech
    • Why does rifaximin cost 95 percent more in the U.S. than in Asia?

      Jai Kumar, MD, Brian Nohomovich, DO, PhD and Leonid Shamban, DO | Meds
  • Recent Posts

    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Adriana Smith’s story: a medical tragedy under heartbeat laws

      Nicole M. King, MD | Physician
    • What if medicine had an exit interview?

      Lynn McComas, DNP, ANP-C | Conditions
    • Why U.S. health care pricing is so confusing—and how to fix it

      Ashish Mandavia, MD | Physician
    • From survival to sovereignty: What 35 years in the ER taught me about identity, mortality, and redemption

      Kenneth Ro, MD | Physician
    • When doctors forget how to examine: the danger of lost clinical skills

      Mike Stillman, MD | Physician

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

Leave a Comment

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

    • Why removing fluoride from water is a public health disaster

      Steven J. Katz, DDS | Conditions
    • When did we start treating our lives like trauma?

      Maureen Gibbons, MD | Physician
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Graduating from medical school without family: a story of strength and survival

      Anonymous | Education
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
    • My journey from misdiagnosis to living fully with APBD

      Jeff Cooper | Conditions
    • Addressing the physician shortage: How AI can help, not replace

      Amelia Mercado | Tech
    • Why does rifaximin cost 95 percent more in the U.S. than in Asia?

      Jai Kumar, MD, Brian Nohomovich, DO, PhD and Leonid Shamban, DO | Meds
  • Recent Posts

    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Adriana Smith’s story: a medical tragedy under heartbeat laws

      Nicole M. King, MD | Physician
    • What if medicine had an exit interview?

      Lynn McComas, DNP, ANP-C | Conditions
    • Why U.S. health care pricing is so confusing—and how to fix it

      Ashish Mandavia, MD | Physician
    • From survival to sovereignty: What 35 years in the ER taught me about identity, mortality, and redemption

      Kenneth Ro, MD | Physician
    • When doctors forget how to examine: the danger of lost clinical skills

      Mike Stillman, MD | Physician

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

Leave a Comment

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

Loading Comments...