end-of-life care Archives - Better Health While Aging

How to Plan for Decline in Alzheimer’s Dementia:
A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress

Q: My mother is 76 and has Alzheimer’s disease. She had a couple of unavoidable stays last year in the hospital (due to falls). This accelerated her decline due to delirium, which was treated as if she was just being an unruly and difficult patient. Once my sister and I understood what was going on due to this site’s information, we have been able to protect and support her.

Right now things are stable and quiet, so we are trying to plan ahead.

How should we go about planning for the years of decline my mother may experience before her actual last moments near death? It’s hard to imagine this possibility and I need help facing the (to me) not so obvious.

We have a will, power of attorney, and health care proxy in place.

A: Great question, and especially good that you’re taking advantage of a “quiet period” to address these issues.

It’s a little tricky to answer this question without knowing more about your mother’s current ability to participate in decision-making and in planning for her future care.

Since you say she’s declined after hospitalizations for falls and delirium, let me assume that she has moderate Alzheimer’s and can’t manage more than perhaps expressing some of what she likes and doesn’t like. (For more on the stages of Alzheimer’s and related dementias, see here.)

At this point, you’ve been through some health crises already, and you’ve seen her decline. You’ve also probably gotten a sense of just how many decisions have to be made on her behalf. Some are about her medical care and some are about other aspects of her life, like where she lives and how she spends her days.

Planning ahead is an excellent idea. Obviously, it’s simply not possible to anticipate and plan for every decision that will come up.

But let me offer you an approach that you can use both now as well as “in the heat of the moment” when specific issues arise. This is a framework to help you navigate all kinds of care decisions and future crises that you may encounter.

The following five steps will give you a foundation for anticipating, processing, and reacting to the complications and problems of later-stage Alzheimer’s, with less anxiety and more confidence. These steps are: [Read more…]

Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned

by Leslie Kernisan, MD MPH

Q: Dear Dr. K,

With all the news about opioids and benzodiazepines, and their risk of death, I would love to hear your take on the use of these drugs in hospice.

We’ve had two family experiences now (my Mom and my Aunt) who were given these drugs right away when they went on hospice…without hospice trying anything else first that would be less dangerous. My Mom was up and about walking one day at her memory care facility, even laughing. The next day, when hospice put her on morphine and Ativan, she was in a coma. She died 13 days later without ever regaining consciousness. When I protested and asked why she wasn’t waking up, the hospice nurse said, “It’s not the drugs, it’s the disease.” (Mom had dementia.) The nurses wouldn’t let us give her fluids (“you don’t want your mother to aspirate, do you?”) or feed her (“you don’t want your mother to choke, do you?”).

With my Aunt, she had also been in the memory care facility and got to the point of needing a two-person assist. Her power of attorney (POA) was given the choice of moving my Aunt into a nursing home or bringing in hospice. Hospice immediately gave her morphine and Ativan, then backed off the Ativan and gave her morphine every two hours until she died 3 days later.

Now the third sister, also with dementia, has been in hospice for two months and counting. She is lucid most days, eating/drinking, comfortable—all without the opioid/benzo drug combo, because of our experience.

How can family members identify a hospice that doesn’t use this troubling combination of drugs from the start, without first trying something less dangerous, to make a patient “comfortable”?

A: Thanks for sending in this question. I’m very sorry to hear that your experiences with hospice have left you concerned.

It is indeed extremely common for hospice to use morphine and lorazepam (brand name Ativan) to treat end-of-life symptoms. That’s because many people on hospice are suffering from troubling symptoms that these medications can relieve, such as pain, shortness of breath, anxiety, and agitation.

Still, these medications are not always necessary. They are supposed to be prescribed and used as required to relieve the dying person’s symptoms, not by default. So the situation you describe with your mother and your aunt does sound potentially concerning. At a bare minimum, the hospice personnel should have done a better job of discussing their proposed care plan with your family.

Now let me be clear: I cannot say if the way they prescribed morphine and lorazepam was inappropriate or not, because it’s impossible for me to know the specifics of your mother and aunt’s medical situation.

Still, we can certainly review some basics about hospice care for people with Alzheimer’s and related dementias, as well as recommended best practices, when it comes to using opioids and benzodiazepine sedatives.

Here’s what I’ll cover: [Read more…]

POLST: Resources & Tips on Avoiding Pitfalls

by Leslie Kernisan, MD MPH 14 Comments

In this post — the last in a 4-part series on better planning for health crises and end-of-life care — I want to tell you about a document that I wish more families knew about: POLST.

POLST (which stands for Physician Orders for Life-Sustaining Treatment) is a legal document meant to tell healthcare professionals what you want done, in the event of a medical emergency. It’s kind of like a pre-hospital DNR (do-not-resuscitate), but much much better. (For starters, you don’t have to be DNR to use a POLST form.)

Note that POLST is not an advance directive, although when doctors ask if there is an advance directive, they are often thinking of POLST as well. (Because what they are really asking is, is there any pre-existing documentation that can help us understand what we should and shouldn’t do?)

And it’s not a perfect approach to making sure older adults get the care they want and need, when a health crisis hits. If you have heard of POLST, you may very well have heard some negative things; I’ve certainly heard some complaints over the years about POLST forms, or about how something didn’t quite work out despite the presence of a POLST.

Still, I really like POLST, and discuss POLST forms with many of the older adults and families that I work with. In California, POLST has largely replaced the pre-hospital DNR forms that some older adults used to have.

Furthermore, a study published in 2014 confirmed that in Oregon, where the POLST approach was first pioneered, POLST forms have helped get end-of-life wishes honored more often. (The New Old Age Blog published a related post recently, titled “When Advance Directives Are Ignored.”)

If you’re caring for a frail older person and you live in one of the many states with a POLST program — click here to find out if your state has POLST — I highly recommend you incorporate this tool into your loved one’s advance care planning. In most cases, a surrogate medical decision-maker can complete a POLST form.

In this post, I’ll share some resources on learning to use POLST to better plan for health crises and end-of-life care.

I’ll also offer some tips on avoiding common pitfalls, such as completing POLST without first addressing the learning and conversing parts of advance care planning. [Read more…]

5 Tips to Help You With End-of-Life Planning

by Leslie Kernisan, MD MPH 7 Comments

Living wills. Advance directives. Powers of attorney for healthcare. Making your wishes known.

Many older adults have never gotten around to addressing these issues.

Others are overdue for a review. After all, this is not something where you should “set-it-and-forget-it.” Especially not if you completed the paperwork with a lawyer years ago, and have experienced changes in your health since then.

In previous posts on this site, I’ve shared two true stories about older adults facing health crises, and possible end-of-life situations. (See here and here.)

In both situations, the older person and his/her family had to weigh their options. We also helped them consider the benefits versus the burdens of the choices available.

It is these kinds of situations that advance care planning is supposed to help us — patient, family, healthcare providers — prepare for.

But I know that many older people haven’t gotten around to completing — or revising — their advance care planning. Which is a shame, since this will make it harder for their family and doctors to provide the right help if a medical emergency arises.

So in this article, I’ll try to make this process easier for you and your family. Here’s what we’ll cover:

What is advance care planning,
The four key steps that should always be part of advance care planning,
Five tips to help you — or your older parent — address advance care planning.

I’ll also tell you about some of my favorite resources available to help seniors with all of this. These can really make it easier for older adults to sort out what they want, and have the necessary conversations with others. [Read more…]

A Trial of ICU Care: a true end-of-life story

by Leslie Kernisan, MD MPH 8 Comments

This month I am featuring a series of posts about aging, health crises, and (possible) end-of-life situations. Earlier this week, I shared the story of Mrs. F, a very ill older woman with cancer who said she didn’t want to go to the hospital, even though she wasn’t on hospice.

Now, I want to share another true story, about a nonagenarian with cancer. He was DNR and we had planned for comfort care once his symptoms got worse. But when he fell dangerously ill, I ended up advocating for him to go to the Intensive Care Unit. Below is the story, with tips for caregivers at the end.

[This story was first published in 2010, on Caring.com’s Older Patients Wiser Care blog.]

The case: An unlikely candidate for intensive care

Some people in their 90s are lucky enough to still be strong and independent, but Mr. H wasn’t one of them. He’d been wheelchair-bound ever since a bad hip fracture a few years prior cost him his ability to walk. He also had mild dementia, which made him somewhat forgetful and disorganized.

Nonetheless, this WWII veteran was a perennially cheerful presence in our VA’s Nursing Home Care Unit, always eager to join in on activities and outings. “Thank God for the VA!” he’d tell me when I’d come see him for his monthly medical check-ups.

But his smile faded the day we explained that we’d discovered a colon cancer, which had spread to his liver.

For years, Mr. H’s records showed he wanted do-not-resuscitate/do-not-intubate (DNR/DNI). Now that he had advanced cancer, he and his son asked that all future medical care focus on maintaining comfort, function, and quality of life for as long as possible. Treatment of infections was okay if we thought there was a good chance of success. And they wanted to consider hospice once Mr. H was having more pain or other end-of-life symptoms.

Being the cheerful and forgetful type, Mr. H was soon back to his usual activities in the nursing home. Over the next three months, we all practically forgot he had advanced cancer.

That is, until the day that nurses found him weak and feverish in bed, with low blood pressure. The ER doctors found that Mr. H had a bad urinary tract infection (UTI) and IV antibiotics were started. When his blood pressure continued to drop, the Intensive Care Unit (ICU) team was called: When bad infections cause life-threatening low blood pressure, patients need ICU care.

The ICU doctor, however, balked. “He’s very old, has metastatic cancer, is DNR/DNI, and from his chart it looks like his family doesn’t want any invasive procedures. So he’s not appropriate for the ICU.”

In his gurney, Mr. H looked at us quizzically. Despite his very low blood pressure, he was still awake and weakly smiling. But without special blood pressure medications (known as pressors) only available in the ICU, the medical staff knew it was incredibly unlikely that he’d survive this common infection.

The challenge: It’s not always easy to turn goals and care plans into actions [Read more…]

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