Doctors’ End-of-Life Language, Impact on Patient-Caregiver Decisions (Research, Video 5:23)

Some call it “framing” the conversation a certain way that heightens the odds of a particular response. No matter what the procedure is called, end-of-life decisions about treatment options for critically and terminally ill patients can be influenced greatly by how doctors present information to patients and caregivers.

In a study about doctors’end-of-life language, a simulation involving an older adult with end-stage cancer and life-threatening hypoxia (deficiency of oxygen reaching the tissues ) was followed by a debriefing interview. Doctors participating were hospitalist, emergency medicine, and critical care physicians from three academic medical centers. Their encounters regarding presentation of treatment options were observed in real time and analysed.

Results:

1)  Among 114 physician subjects, 106 discussed life-sustaining treatment, 86 discussed palliative care, and 84 discussed both.

2)  Doctors framed life-sustaining care as necessary (53%), while framing palliative care as optional (49%).

3)  Among doctors who framed life-sustaining care as imperative, 16 (30%) felt intubation (insertion of a tube through mouth and airway to assist with patient’s ventilator breathing) would be inappropriate in this clinical situation.

The majority of doctors framed end-of-life patient options by implying

that life-sustaining treatment was the expected or preferred choice.

Framing options in this way can greatly influence treatment decisions

made by patients and caregivers.

The following video is an excerpt of a televised edition of Frontline. It features patients, families, and doctors facing complicated end-of-life decisions at the Mount Sinai Hospital intensive care unit in New York City:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

End-of-Life Preferences: Do Doctors and Surrogates Discuss Them? (Research, Video 2:13)

You are critically ill and can no longer orchestrate your own care. Life-sustaining treatment decisions must be made. Fortunately, you have completed your advance directives and made your preferences and values known to a surrogate whom you have selected to represent you if these circumstances ever arose. What happens to you now will largely depend on decisions involving your surrogate and healthcare clinicians. Will they discuss and honor your wishes?

This is a question researchers have wondered about, too. To what extent are a patient’s wishes honored by doctors and surrogates? In research including 54 physicians and 159 surrogates for 71 patients, audio-recorded conferences in which life-sustaining treatment decisions for an incapacitated patient near the end of life were held. Conversations were coded to keep track of the number of times clinicians or surrogates discussed the patient's previously expressed treatment preferences or values. Treatment recommendations by clinicians that incorporated the patient's preferences or values were also coded. These were the results:

1)   In 30% of conferences, there was no discussion about the patient's previously expressed preferences or values.

2)   In 37%, clinicians and surrogates discussed both the patient's treatment preferences and values.

3)   In the remaining 33%, clinicians and surrogates discussed either the patient's treatment preferences or values, but not both.

4)   In more than 88% of conferences, there was no conversation about the patient's values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality.

5)   On average, 3.8% of words spoken pertained to patient preferences or values.

Conclusions:

In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients' preferences or values about end-of-life decision making. In fewer than 12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function.

This research is very disturbing and clearly shows the need for more and better interventions to ensure patients' values and preferences are addressed and integrated into end-of-life decisions. The importance of selecting a surrogate who will truly be your advocate can’t be emphasized enough.

In this video, Barbara Coombs Lee of the advocacy group Compassion & Choices explains how, in some states, the terminally ill can specify what kind of care they want through a Physician’s Order For Life Sustaining Treatment (POLST). However, regardless of what is written, what actually results from doctor-surrogate conferences must include patients’ wishes.

Becoming Dead Wrong at End of Life: What Can Happen When Wishes Go Unheard? (View this outstanding rap video.)

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Deathbed Paranormal Communications (Nurse Research, Story)

Deathbed communications refer to paranormal experiences that may occur with people who are dying and people who are with them. Although this phenomenon has only been scientifically researched in recent years, it has been noted in many cultures around the world for centuries. Hospice staff members have often shared paranormal phenomenon near the time of patients’ deaths.

Have you had the experience of witnessing deathbed communications with someone during the month before that person died? How did these communications make you or the dying person feel? Did they make the dying process better? These are the kinds of answers researchers on deathbed communications sought in a study focused on determining the incidence of these communications during the 30 days before death and their impact on the dying process. 

The study included analyses of 60 hospice chart audits and 75 survey responses by hospice nurses in America. Overall, 89% of the hospice nurses reported patients who experienced deathbed communications and a peaceful and calm death. However, only 40.5% reported a peaceful and calm death without deathbed communications. Apparently, deathbed communications do have a positive impact on the dying process, but they are underreported in patient records and underdescribed in textbooks.

The following is a true deathbed experience that my hospice patient shared with me about an unusual trip she said she had taken that day:

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

“What did you do today?” I asked Rose after feeding her.

“Me? I’ve been spending time with my people. I enjoyed myself a lot.”

“Hey, that’s great. Did your relatives drive in from Chicago?”

“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful places everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”

“Wow! I guess that’s a place you’ll want to visit again.”

“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”

“Thanks. I would really appreciate that.”

“How old did you tell me I was?”

“You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog