Why is Hospice Still A Tough Call–Even for People Who Know?
Check out this hospice fact sheet.
When a person is approaching the end of life, we can find no easy answers, no solution that fits every person’s or family’s situation, even when they know a lot about the options available to them.
To illustrate this you will want to read For Hospice Pioneer, Still a Tough Call, by Paula Span at the New York Times New Old Age Blog. She describes the end-of-life period for Paul Brenner, age 73, who spend years organizing and leading hospice organizations around the country. Despite all of this experience, it was still challenging for Mr. Brenner and for his family to engage with hospice.
Over and over I hear from friends and acquaintances how a loved one uses hospice for the last several days or perhaps a week at the end of life, and I am sometimes puzzled about how difficult it seems to be to decide to use hospice. My observation is juxtaposed with my family’s experience — a bit more than three months when my mother-in-law participated in a hospice program that made us all more comfortable and less stressed during those final months of her life.
Best Quote Read more »
Longer Old Age but Lower Quality Near the End?
A few days ago I added a must read link to Michael Wolff’s New York Magazine article, A Life Worth Ending. It’s an eye-opening piece, detailing long drawn-out decline of his mother. Check it out — it really is a must read.
For our parents there are no easy end-of-life answers. Those of us with older moms and dads still living active and full lives are lucky, but one only has to sit in a Starbucks or linger near the water cooler at work to hear frightening and very sad stories. No one wants to die the long drawn-out way as a helpless invalid,
The single conclusion that I reach is less about my parents lives — we can’t turn the clock back — than it is about my own. At some time in my life, if I reach an advanced age, I need to make some clear and thoughtful decisions about how much medical care I will use … or not use.
Two Quotes from Wolff’s Article to Make You Want to Read More Read more »
The Over-Medicalization of Aging
At what point, as we age, do we become accepting of aches and pains –aging that is — and stop thinking about rushing to a physician all of the time? How do we decide whether or not to fix a problem if it has more to do with the later years of our life than with a traditional medical ailment? Can we depend on our physicians to clearly tell us when a medical problem is as easily addressed by physical therapy as by a surgical procedure of some type — especially when there are low-tech ways to improve the situation.
These are questions for our elder parents to consider; however, those of us who are older adult children also need to think about them. The medicalization of our aging — the tendency of the medical community to always to have a procedure or surgery that purports to solve a problem — potentially exposes seniors to more and more risks without really solving the problems.
To think about future medical problems in the abstract is easy but so much more difficult when they actually occur and become more personal. Aren’t we really turning our later years into big medical procedure-filled adventures rather than accepting that predictable problems will develop as we age — problems that reflect more about the way about our bodies slowing down and less about true medical issues?
An article in the February 20, 2012 Washington Post Health section features an interview with physician Norton M. Hadler, the author of Rethinking Aging, Growing Old and Living Well in an Overtreated Society. It’s worth reading this article and maybe even the book. Read and excerpt from the book.
New Health Care Directive Registry in Virginia
Visit the VA Registry site.
In case you missed this news on December 7, 2011, you may want to learn more about the new Virginia health care directive registry. It’s a free service. This article, Virginia Announces Free Online Health Care Registry, appeared on Richmond’s NBC News 12 site and explains more.
The Virginia Department of Health, working in a public-private partnership with Microsoft and UNIVAL (a health information technology company), now provide the registry as a communication tool to help people save and archive their end-of-life wishes and ensure that these wishes are honored by family members and/or caregivers. Personal preferences are saved in an easy-to-access web location so that loved ones can honor a person’s last wishes when necessary. Registered users will receive an identification care and pin number which can be given to family members.
Individuals can put the following information into the registry.
End-of-Life Documents — Don’t Mess Around
Many years ago, shortly after my daughter was born, my parents asked my husband and me about our will. It turned out, however, that they were less concerned about a will than they were about whether we had signed medical directives or health care proxies that defined what should be done is case one of us, despite our good health and youthful ages (we were 30-somethings at the time), was suddenly very ill and at the end-of-life.
It took a few more years, but we both signed proxies. The final impetus was the news coverage of families who were fighting over a family member who was dying,some of these turning into media circuses where pundits and cable news commentators shrilly proclaimed that they knew what should be done. We resolved never to put ourselves or our families in such a situation.
So it was with some interest that I read a November 16, 2011 Associated Press article in the Chicago Tribune, End of Life Documents Not Huge Concern for Many Boomers, Who Say They Still Feel Young, describing an Associated Press-LifeGoesStrong.com Poll that identified a trend among boomers not to sign medical directives. A number of the people in the article said that they felt healthy and great and just didn’t have time to focus on the task – not the greatest point of view, since life can change in an instant. Read how the poll was conducted.
Not having a medical directive or health care proxy can cause a huge amount pain in a family. Moreover, if an adult child is helping to support aging parents, the lack of a proxy has the potential to cause extraordinary confusion and stress.
The Palliative Care Tent: How to Invite People In?
Click here to visit GetPalliativeCare.org site and learn more.
The Los Angeles Times published an October 24, 2011 article, The Promise and Pitfalls of Palliative Care, by Melissa Healy.
In her article Healy describes how palliative care helps people who are very ill and need to manage everything from their pain to living their lives with quality. These programs also support families. The author also points out that often patients are confused and compare hospice and palliative care, thinking of the two programs as similar rather than as two extremely different types of medical services and support.
Palliative care and hospice care differ in two big ways.
- Patients can receive palliative care from the moment they receive a diagnosis.
- Patients can receive palliative care and pursue treatment options at the same time.
Several Interesting Quotes
- If palliative care were a pill, government regulators would very likely approve it for the U.S. Market. Federal healthcare insurance programs would quickly agree to pay physicians and hospitals for treating patients with the new therapy. And patients would make it a blockbuster drug in no time flat.
- This new branch of medicine is about adding life to patients’ years rather than years to their lives.
Hospice Helps When a Parent With Dementia is Dying
Sometimes acquaintances describe how a hospice program entered the lives of an aging parent during the last week or even in the last few days of life. My husband and I are aware of just how much hospice offered to our family during the four months before his mother died. However, we have spoken with people — who were less satisfied than we were — and more often than not the family received hospice services during the last few days a parent’s life.
An article published in the Journal of the American Geriatrics Society explores the use and effectiveness of hospice with nursing home residents who are dying of dementia. In the article, Does Hospice Improve the Quality of Care for Persons Dying of Dementia? (abstract), Dr. Joan Teno and colleagues explore the perceptions of bereaved family members (538) whose loved ones received hospice services in a nursing home setting at the end of their lives. The researchers interviewed family members following a death, using a cohort that they were tracking in a previous study of dementia patients and feeding tubes. This United Press International article, Hospice Helps Dying for Dementia Patients, adds a few more details.
Becoming A Grown-up Child
One day in April 2007 my husband and I were the adult kids in our families — we are the only adult children
— and the next day we became what we laughingly call “real grown-ups,” helping first one, then two, and for a while all three of our parents. It’s time to give back, and we do so willingly and happily. However the process is not easy, and it is not free from anxiety and tension. Check out the As Our Parents Age About page to learn more about the mission of this blog.
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