Aging Parents: Important New Guidelines Could Make it Easier for Those nearing Life’s End

DYING IN AMERICA AND HONORING INDIVIDUAL PREFERENCES NEAR THE END OF LIFE, with recommendations for major changes, was issued last week (9/17/14) by THE NATIONAL ACADEMY OF MEDICINE’S RESEARCH ARM, THE INSTITUTE OF MEDICINE. It suggests an overhaul of current practice at almost every level. (See “Newsworthy” 9/17/14 at right for NY Times report on the report.) 

Palliative Care is mentioned several times as an important aspect of the “overhaul” ideas. While we obviously can’t count on this recommended “overhaul” to take place immediately, it would seem that those not familiar with palliative care, would do well to check out specifics in the “Newsworthy” (right sidebar) 12/16/13 NPR Palliative Care broadcast–as well as “Related” below.

Palliative care is an available option that– if appropriate–could make a significant difference for caregivers and the comfort level of elders as we try to help parents age well….until the end.

Related: Post– Palliative Care and Hospice Both Help Aging Parents: Know the Difference.
                         An Oregon Health Sciences University Prof Weighs in, supporting the new Guidelines

 

 

Aging Parents: As Mother Lay Dying

Among the Things I Wish I Knew…Ahead of Time

Helping parents age well doesn’t end until their heart beats its last beat, to my way of thinking. I didn’t realize I thought (or felt) this until Mother rebounded amazingly for three months after successful heart valve surgery, then went into a coma. (We’d been warned the surgery could stress other parts of the heart and end in heart failure, which it did.)

Mother was already hospitalized when I raced (flew) cross country, rented a car, and broke every speed limit to be at her hospital bedside. Half hour later she was in a coma. Something in me (and I think in Dad) wanted her to be able to die at home. But it was Memorial Day weekend and we learned, upon asking, that getting any kind of caregiver etc. help immediately was out of the question.

An attractive room in the mostly-empty hospice section of the hospital was available and was suggested to us as an option. Local designers had decorated each room individually–very pleasant atmosphere. Regardless of Mother’s state of functioning, she would like this pretty room I thought. She was moved there. Perhaps it made only Dad and me feel better.

Never-the-less I remember going out within the hour and buying fresh fragrant flowers for her bedside table. I wasn’t in denial. She’d always loved the fragrance of flowers and although they say hearing is the last to go, I was uncertain about sense of smell. Looking back, I realize I would do what I could to help my parents age as well as possible until the very end. Today I think that would have included palliative care. We would have been better prepared. If Mother and Dad wanted it, Mother would have been at home and not in the hospital at the end.

This outstanding (to me) NPR radio segment, “How Palliative Care Helps–One Iowa Family’s Experience,” features a family and the physician supporting them. A rare front-row seat, so to speak, of palliative care in action. Those of us who have been helping our parents age well (whether on-site, or from far away like myself), help both our parents and ourselves when we understand outside sources of support (palliative care and hospice) and their differences–way in advance of ever needing them–if possible.

Related:

https://helpparentsagewell.com/2013/03/09/pallative-care-and-hospice-both-help-aging-parents-consider-the-differences/

 “Newsworthy” (right sidebar). Links to timely research and information from highly respected universities and professionals,  plus some practical stuff, to help parents age well.

Palliative Care and Hospice Help Parents Age Well Until the End: What’s the Difference?

“Perhaps the most common misconception about palliative care is
that it is synonymous with hospice care….”
UCLA Medicine Magazine 2009
(Now Called U)

Aging as well as possible, as long as possible

Some time ago I saved the link to Comfort Measures from a 2009 UCLA (University of California at Los Angeles) Medicine Magazine, written after Mother’s death. Prior to reading it, I’d thought palliative care was the same as Hospice. It isn’t. This informative article explains that “…….it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.”

In other words, palliative care can begin long before a doctor’s diagnosis that the patient will probably die within 6 months. That’s the diagnosis needed when Hospice offers its services. (That said, calling in Hospice is not necessarily confirming a death sentence. See Hospice link below with information that not all people receiving Hospice care die within 6 months. Some improve due to Hospice’s care and go off Hospice…and can still go back on later.)

Excerpt:

IT WASN’T LONG AGO that comfort and the psychosocial needs of seriously ill patients and their families were not top priorities for medicine, but that has changed. “The relief of suffering and the cure of disease are both obligations of the medical profession,” says Bruce Ferrell, M.D., director of palliative-care services at UCLA. “People sometimes see a rigid healthcare system that can become disconnected from the mission of providing people with humane, respectful care. Our goal is to assist them so that patients don’t suffer needlessly.”

Palliative care – which aims to relieve suffering and assist seriously ill patients and their families to address issues of treatment and support that arise in life-threatening illnesses – is among the fastest growing medical subspecialties, fueled by a number of forces, not the least of which is consumer demand. The Journal of Palliative Medicine estimates that palliative- care programs have doubled since 2000, with more than half of hospitals with at least 50 beds now having such a program. That includes UCLA, which since 2007 has had a palliative-care service providing consultations 24 hours a day, seven days a week, at both its Westwood and Santa Monica campuses….

Perhaps the most common misconception about palliative care is that it is synonymous with hospice care; in fact, though it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.

“It used to be that all of our efforts at patient care were directed at curative interventions up until the point that patients were on their deathbed, and then everything turned to comforting them in the last few days of life,” says Dr. Ferrell. “Today, there is greater appreciation for the importance of symptom control and discussions with patients and their families about the natural history of their disease early in the course of the illness.”

Read Comfort Measures in its entirety at: http://magazine.uclahealth.org/body.cfm?id=6&action=detail&ref=702

Related:
https://helpparentsagewell.com/2012/03/24/aging-parents-and-hospice-to-call-not-to-call-when-to-call/

http://www.npr.org/blogs/health/2013/12/16/250194489/how-palliative-care-helps-one-iowa-family-s-experience