Quality of Life and Palliative Care

Quality of Life and Palliative Care

Sandra M. Swain, MD, FACP, FASCO

Nov 01, 2012
I recently attended a session at the 2012 Cancer Center Business Summit titled “Practical Issues in Palliative and Quality-of-Life Care,” led by John E. Hennessy, CCP, Kansas City Cancer Center/University of Kansas Cancer Center; Beth Lown, MD, Harvard Medical School and the Schwartz Center for Compassionate Healthcare; and Karin Porter-Williamson, MD, Palliative Care Services, University of Kansas Medical Center. In addition, Thomas J. Smith, MD, Director of Palliative Medicine, at Johns Hopkins Medical Institutions, gave a luncheon lecture on the topic titled, “Telling It Like It Is . . . Truth Telling to the Profession.”

I wanted to share some of the “pearls” I heard from them and from the audience, as well as share some of my own thoughts regarding how to approach palliative care. This is a huge topic—about which much has been written—and it’s one that is very important to me. The following are just some of my thoughts inspired by the two-day meeting and by no means complete.

Achieving “personalized” medicine includes helping patients with cancer live well throughout the continuum of their cancer care. The trajectory to the end of the journey is very personal, and as much effort needs to be made along the way for palliative care as for molecular therapy in patients with advanced disease.

To aid in this goal, Dr. Tom Smith asks his patients:
  • What do you want to know about your illness?
  • What do you know about your illness?
  • How are you coping with your illness?
  • Ask, Tell, Ask.
    • Ask permission.
    • Tell in understandable language.
    • Ask “What is your understanding of your situation?”
  • What is important to you?
  • Tell me more

Unfortunately, many doctors are unable to do this well, and if they can’t communicate effectively, then other members of the team should do it for them. These discussions should be initiated with any patient who is beyond the first line of treatment for metastatic disease and the earlier the better. We owe it to our patients to be honest because this is not sudden death. Sudden death is being hit by a bus and dying. That person has no chance to have the conversations they want to have or have closure. Our patients do have that chance, and we need to make sure they have the information they need.

Changing the language and framing conversations
We need to frame conversations appropriately. We need to get away from “Fight Win Live” language with its implication that if a person isn’t constantly “fighting,” he or she will “Stop Lose Die.” Better language can include the following:

  • We will not allow cancer to cause pain or interfere with your relationships.
  • We hope that you will live but worry that our tools may not work.
  • We are giving you aggressive supportive care to help you live as well as you can.

It is important that we explain that palliative care treatments offer ways to treat cancer in addition to or in place of chemotherapy.

It is also important that we integrate the palliative care team early when our patients are on active treatment; it helps if both treatments are linked visits.

Additionally, it is important to acknowledge the feelings of patients and their loved ones and caregivers. For example, if there is anger, acknowledge that anger and give people a safe forum to share those feelings.

As oncology professionals, we must also hold boundaries that are in line with what we believe is good care, and what we have told the patient and their loved ones and/or caregivers already. For example, if you have said that “more treatment is futile,” don’t let them push you to say “let’s try one more thing.” Many will test your boundaries, so stay firm.

If a caregiver or family member wants to push and the patient doesn’t—but feels like he or she is a failure for not going along with a loved one’s wishes—then have a conversation with that family member or caregiver. Ask that person to see that the patient has courage and has accomplished more than most people by making it to this point. Try to pivot them to be proud of their loved one and let the patient live well at the end of his or her life. It can be miraculous if it works with a good end for all. (The audience member who related this information said it with a broken voice as he remembered the conversations he had many years ago.)

Involve the entire staff
Per Dr. Tom Smith, the definition of “hospice” is that it is a type of care and a philosophy of care that focuses on the palliation of a terminally ill patient’s symptoms, pioneered in the 1950s by Dame Cicely Saunders. It is not a place you go—it is specially trained nurses and doctors who provide an extra layer of support.

Therefore, all staff involved with patients should be educated about palliative care. This includes nurses and nonclinical members of the team. They see the signs first and have more interaction with the patients on a frequent basis.

ASCO’s work on palliative care
ASCO has worked over the last several years to increase oncologists’ understanding of the important role palliative care plays throughout the trajectory of cancer care. Additionally, ASCO has developed several resources to help oncologists with these difficult conversations. Please see the 2009 ASCO Statement on Palliative Care, the 2011 Individualized Care for Patients with Advanced Cancer, and the 2012 Provisional Clinical Opinion titled “The Integration of Palliative Care into Standard Oncology Care.” ASCO will also be developing additional guidance on this topic in the coming year.

What are your pearls of wisdom?
The issue of palliative care is obviously an important one for our field. It is also an issue that has varying global and cultural challenges. Please share your own “pearls of wisdom” on how we can better approach the issue and thus better serve our patients.


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Nagwa Abdel Rahman Ibrahim, PharmD, PhD

Nov, 02 2012 3:20 PM

Thanks Dr. Sandra for discussing this critical topic. I am glad to know that ASCO has developed resources to help oncologists with these difficult conversations.  I liked your status “we need to frame conversation appropriately” and “Many will test your boundaries, so stay firm”.  I believe that such a conversation is considered as an art all staff involved with patients should have and learn to improve cancer care.     

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