Posted by Dr. El - June 30, 2010 - Communication, End of life, Resident education/Support groups
The Health Insurance Portability and Accountability Act (HIPAA) ensures that the personal information of our nursing home residents stays personal, but sometimes it’s taken too far. Well-meaning staff members, not wanting to violate HIPAA, are unsure whether or not to share news of a resident’s death with their friends in the nursing home, so they err on the side of caution. This leaves other residents wondering what happened, and, if they suspect a death occurred, they’re left with the unhappy knowledge that their own death could also pass unacknowledged.
Some members of Psychologists in Long Term Care recently discussed this and the consensus was that since someone’s death is a matter of public record, letting other residents know about it is not in violation of HIPAA. To follow up on this, I contacted the New York State Department of Health Nursing Home Hotline (888-201-4563) and they concurred: it’s okay to tell others that the person died, but not to give medical details.
Similarly, it’s within HIPAA guidelines to let a roommate know, for example, that their friend in the hospital should be returning to the nursing home soon, but not to discuss details of their health condition without the permission of the hospitalized resident or their family.
Part of creating more homelike nursing facilities is honoring the bonds created between residents. It’s important to share news, within the limits of HIPAA, of how friends and neighbors are faring, and it’s especially important to acknowledge the lives and deaths of those in our care.
Posted by Dr. El - October 15, 2009 - End of life
One of our dear cats is very sick. This prompted a family discussion about how much care to provide him, and led to a talk about our own wishes should we become ill.
I recently read a post on
WiseHands, a massage therapy and hospice blog, about how working with people who are dying can change the way we feel about death. Part of my job as a nursing home psychologist is to help people prepare for death, and it took time for me to grow comfortable with this. I find my patients usually welcome the opportunity to discuss treatment decisions and dying, but sometimes it takes several attempts before they are fully ready to talk about it. I imagine it would be the same for family members trying to have similar conversations.
Posted by Dr. El - August 19, 2009 - Depression/Mental illness/Substance Abuse, End of life, Role of psychologists
The two most important moments in a person’s life are coming into this world and leaving it. I might not be able to help someone have a good life, but I can help them make the most of their last months or years and to have a good death. That’s well worth my time and energy. More on that in a future post. Here’s a link to an article on the topic that was posted on Yahoo today.
Link to Yahoo story
Study finds end-of-life counseling improves mood
By CARLA K. JOHNSON, AP Medical Writer – Tue Aug 18, 4:00 pm ET
CHICAGO – As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.
The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital. The research didn’t look at costs.
The study’s publication in Wednesday’s Journal of the American Medical Association coincides with the fight over health care overhaul proposals in Congress.
Some conservatives have called end-of-life counseling included in one version of the bill “death panels” and a step toward euthanasia. A House proposal allows Medicare to pay doctors to chat with patients, if they desire it, about living wills, hospice and appointing a trusted person to make decisions when the patient is incapacitated.
President Barack Obama called the euthanasia charge “simply dishonest.” Health and Human Services Secretary Kathleen Sebelius has said the end-of-life proposal is likely to be dropped from the final bill.
In the new study, trained nurses did the end-of-life counseling, mostly by phone, with patients and family caregivers using a model based on national guidelines.
All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.
Patients and their caregivers also could attend monthly 90-minute group meetings with a doctor and a nurse to ask questions and discuss problems in what’s called a “shared medical appointment.”
Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.
On the quality of life scale, patients could score up to 184 points. The groups were about 10 points apart in the last assessment before they died. On the mood scale, patients could score up to 60 points and the groups were about 5 points apart.
The patients who got the counseling also lived longer, by more than five months on average, but that finding didn’t reach a statistical level of significance.
Patients getting such counseling often thank the nurses helping them, said lead author Marie Bakitas, a researcher and nurse practitioner at Dartmouth Hitchcock Medical Center in Lebanon, N.H.
“They seem to feel a whole lot better knowing there’s someone who’s looking at the rest of them and not just the tumor,” Bakitas said.
In both groups, hospital stays were rare: six to seven days on average during the patients’ last year of life. Betty Ferrell of City of Hope Medical Center in Duarte, Calif., who has done similar research but wasn’t involved in the new study, said that’s not surprising.
“It’s patients and families in their own living rooms who are dealing with end-of-life care,” Ferrell said. “They’re not in the hospital. They’re at home.”
Ferrell, who leads a guidelines panel on end-of-life care, praised the study, which was funded by the National Cancer Institute, and said she hoped it would clear up misconceptions.
“This is about helping people live with the diagnosis the doctor has given,” Ferrell said. “This study reflects on what kind of support do people deserve when they’re dying.”
