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

Hospice Patient Discharge (Research, Long-Term Care Story)

Hospice does not speed up death. If two terminally ill patients had identical issues, the one in hospice care would probably live longer. During my years of hospice volunteering in Detroit, Michigan nursing homes, I rarely had patients leave hospice alive.

Who leaves hospice alive? Discharges can occur when patients decide to resume curative care, when their conditions improve beyond hospice guidelines, or when hospices inappropriately use live discharge to avoid costly hospitalizations. A national study of live discharges from hospice stated that approximately 1 in 5 hospice patients is discharged alive with variation by hospice programs and by geographic regions. Connecticut has the lowest rate, and Mississippi has the highest. Not-for-profit hospices and older hospices have lower rates of live discharge.

From the perspectives of patients and family members, what are the experiences of adults discharged from hospice programs due to decertification related to ineligibility or extended prognosis? A hospice discharge research study reported that two primary themes emerged. One theme was suffering, and the other theme was the paradox of hospice discharge. Subthemes included abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, bearing exhaustive witness, having and needing support, mixed feelings, not dying fast enough, and hospice equals life. Clearly, more study about the hospice discharge experience is needed for healthcare providers to offer appropriate support to patients and families.

People are often surprised when I speak about patients leaving hospice alive, especially when I tell them Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her fourth roommate was actually an imaginary admirer named Robert, whom she loved like the devil loves holy water. One day, she surprised me with talk about leaving hospice care and the nursing home:

Raynell requested my help by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

I responded, “Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert (annoying imaginary boyfriend) had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation.  It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she never said Robert was hiding under her bed, and she needed me to chastise him for her. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he was left.

© Excerpt above from Becoming Dead Right

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

Older Adult Romance: Internet, Speed Dating (Research, Video 4:34)

If you’re an older woman seeking a male dating partner, the choices get slimmer with time. Perhaps you have considered lowering the bar in terms of your preferences. Perhaps not, especially if you’ve grown to love the freedom and carefree lifestyle of single living without a partner. Older men, on the other hand, look around and see more possibilities available among potential women to date as they age. Options like Internet dating and speed dating add new flavors to old traditions. Seems like choosing romantic partners is much different from the days when they were all younger. But are older adults similar to young people today in their dating choices?

Research on Internet dating profiles for 100 older adults and 100 younger adults indicate that older adults (and especially older women) were more selective than younger adults when it came to the age, race, religion, income, and height of a prospective dating partner. Perhaps these older adults are more selective because of lessons they learned through the years. Being a little picky can be a good thing when one doesn’t feel desperate.

But older adults can’t be viewed as a homogeneous group. They include such a wide range of ages and types that their quest for romantic love has to be categorized in three divisions: the young-old, the middle-aged old, and the old-old. In terms of courtship, the young-old and middle-aged old are more likely to mention adventure, romance, sexual interests, and seeking a soul mate and less likely to mention health in their preferences.

Some older adults concerned about the passage of time are using speed dating when they want to quicken the dating process. After losing her husband of 47 years over a year ago, Roz tries speed dating in her quest for friendship or romance. View this video to see her results:

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

Afterlife Beliefs: Mourning Older Adult Spousal Death (Research, Video 4:25)

Do you believe in life after death? Do you think death is the end, and there is no afterlife? Many people have varied ideas about this topic, and their beliefs can impact their psychological adjustment to a loved ones’ death.

Afterlife research indicates that symptoms such as anxiety, depression, intrusive thoughts, and yearnings of recently bereaved older spouses are affected by whether they believe in an afterlife or not. After a loss, uncertain or bleak views about the afterlife were associated with various aspects of distress, including symptoms similar to post-traumatic stress (PTSD). With no expectation of ever being reunited with a loved one, many have had greater difficulty adjusting, even months after the loss.

Apparently, beliefs in an afterlife help older adults cope with spousal loss better than they would if afterlife beliefs are uncertain or pessimistic. These findings are consistent with other recent work regarding “continuing bonds” with the deceased.

Doctor Jeffrey Long, a radiation oncologist, says he has scientific evidence of an afterlife and explains his findings on the “Today Show” in this video. Mary Jo Rapini, who says she has had a personal near-death experience, joins him:

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