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:

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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:

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POLST: Resources & Tips on Avoiding Pitfalls

by Leslie Kernisan, MD MPH

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.

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

by Leslie Kernisan, MD MPH

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.

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

by Leslie Kernisan, MD MPH

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

The ICU doctor had a legitimate point. The goals of Mr. H’s medical care were supposed to be maintenance of comfort, function, and quality of life. For elderly people with advanced cancer, who are unlikely to live more than several months no matter what medical care they get, ICU-level care generally doesn’t help advance those goals.

Still, I found myself hesitating to switch to comfort care. Despite his many medical problems, Mr. H had been maintaining his function and his quality of life. Like many people with advanced illness, Mr. H had said he’d prefer to be treated for reversible medical problems, such as infections, especially if the chance of recovery were good, and the treatment wouldn’t be too burdensome. I felt that with pressors and antibiotics he had a decent shot at recovery from his UTI.

The catch was that Mr. H had more than a garden-variety UTI. Whereas many UTIs can be treated with oral antibiotics, Mr. H’s infection had spread to his bloodstream. To treat it, he would need to have a central catheter threaded into one of the big veins of his neck or groin; it’s not possible to give pressors through the more common small IVs that are placed in the hand or arm. But would he find a central catheter, and ICU care, too burdensome?

“Ask him what he thinks,” said the ER doctor.

“You’re my doctor. I trust you to tell me what to do,” quavered Mr. H.

The solution: A limited trial of intensive care to balance the benefits and burdens

We were running out of time to discuss: Mr. H’s blood pressure kept dropping. I called his son. “Normally I don’t recommend ICU care for people of his age and medical condition,” I said, “but in this particular case, one reasonable option would be to try 24 to 48 hours of ICU care, to see if we can turn him around. He might get better. But if he gets worse, we would make him as comfortable as possible until he dies.”

The son agreed, and Mr. H was whisked up to the ICU.

The next day, I found him sitting up with a breakfast tray, his central catheter taped to the side of his neck. After 12 hours of pressors and antibiotics, his fever had gone away, and his blood pressure had improved to the point he no longer needed the pressors.

“The nurses have been nice but I don’t like it here,” he complained. “Can I go back to the nursing home today?”

Three days later, Mr. H was discharged back there, where he re-engaged in his favorite activities and remained active for another 10 weeks. Eventually he became weaker and was transitioned to hospice.

He died peacefully in his bed, five months to the day after his admission to the ICU.

My take-home points for family caregivers:

Be sure to re-address goals of care after a new major medical diagnosis or significant chance in health status.
Know that even among people with advanced illnesses, it’s often reasonable to treat reversible medical problems such as UTIs, especially if the treatment isn’t too burdensome and there’s a good chance of recovery.
Understand that sometimes it can be hard to figure out just what is “too burdensome.” Reasonable doctors sometimes disagree about how good the chance of recovery is.
If you and your loved one have agreed on a care plan focused on comfort and quality of life, expect that sudden illnesses or other declines in health will need to be discussed as they come up.
It’s often reasonable to try a time-limited trial of more intensive treatment, with a plan to reassess within a day or two.

Have you ever struggled with how to manage a health crisis in a frail older person like Mr. H? I’d love to hear from you in the comments section below.

The Power of Offering Alternatives: a true end-of-life story

by Leslie Kernisan, MD MPH

How might we help a sick older person have a better end-of-life experience? Planning for future health crises and end-of-life situations — a process known as advance care planning — is certainly important.

But, not every health crisis can be completely planned for. And it’s often hard, in the moment, for family members and doctors to figure out how to honor a person’s wishes. Below, I’d like to share a true story about a dangerously ill older woman, who wasn’t on hospice but said she didn’t want to go to the hospital.

The case: To ER or not to ER?

As I puttered around my house one Saturday morning, my pager went off. “Dr. Kernisan? This is Tina from the nursing home. We’re calling you about Mrs. F. She’s 78 and has a diagnosis of advanced lymphoma. She’s been anemic and just got a blood transfusion again a few days ago. She’s now very weak, pale, and her blood pressure is low. Her poop looks red.”

Although by then I had fired up my computer and was remotely logging in to Mrs. F’s chart, this sounded like a no-brainer. I didn’t know Mrs. F personally, but that weekend I was on call by phone for our medical group’s nursing home. From the brief description, Mrs. F sounded critically ill, and was probably bleeding internally. She needed hospitalization ASAP.

“But she says she doesn’t want to go to the ER,” the nurse continued. “She says she hates the hospital and wants to stay in the nursing home.”

This stopped me short. “Is there an advance directive in her chart? Is she usually able to make medical decisions?” I asked.

“It says she is DNR, but it looks like that was just decided a few weeks ago. It says transfer to the hospital is ok. It looks like she’s been offered hospice, but she hasn’t signed up for it. She does usually make medical decisions.”

I frowned at my computer screen, scrolling through Mrs. F’s chart. She definitely sounded dangerously ill. She had to be hospitalized, probably in the Intensive Care Unit.

Or did she?

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Tools to Help with End-of-Life Planning

by Leslie Kernisan, MD MPH

Yesterday I did a webinar with Family Caregiver Alliance, on end-of-life issues for dementia caregivers.

(4/10/14: I have just uploaded this powerpoint to Slideshare, so you can see my slides here.)

As you can imagine, this is a big topic that can’t be covered comprehensively in an hour.

So, I focused the talk mainly on something that I often find myself wishing families had spent more time on: advance care planning. Specifically, I talked about how individuals and families can approach planning for future medical care, in the context of a diagnosis of Alzheimer’s or another form of dementia.

Why? Because in my own experience, the last stage of life for a person with dementia is often strongly influenced by what kind of planning did — or didn’t — happen earlier on.

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Upcoming Webinar on Dementia & End-of-Life Planning

by Leslie Kernisan, MD MPH

Are you caring for an older person with Alzheimer’s or another dementia?

Would you like to learn more about planning and managing end-of-life issues?

If so, you might be interested in an online webinar this week that I’ll be doing in collaboration with Family Caregiver Alliance.

It’s scheduled for Thursday, November 7th, at 1pm PST (4pm EST). During the webinar, I’ll review how families can better address end-of-life planning in the context of a dementia diagnosis. I’ll also offer some suggestions as to how to handle common challenges at the end-of-life itself.

I will be taking live questions during the last part of the webinar. This is the part that I’m most looking forward to!

To sign up for the webinar, click here: https://www3.gotomeeting.com/register/764240806

Please note that Family Caregiver Alliance, who invited me to present, is charging $15 for the webinar.

How We Can Get to Better End-of-Life Care

by Leslie Kernisan, MD MPH

What is good care at the end-of-life, and how can we do better as a society?

This is the question that the Institute of Medicine (IOM) is now studying, and they have created a “Committee on Approaching Death: Addressing Key End-of-Life Issues.”

As part of their research into the current state of end-of-life care, the IOM is inviting the public to send them comments via this online comments page. (Comments must be submitted by November 1st, 2013.)

In particular, the IOM wants to hear about the following topics:

Barriers to and opportunities for improving care for individuals and their families,
Patient and family experiences with care, and
Health care provider experiences.

Now, as you can imagine, addressing end-of-life issues is a big part of what we do in geriatrics. Furthermore, I’m thrilled to see the IOM addressing this issue, since their reports are highly respected and often end up influencing policy and funding.

So I was very glad to provide some comments to the IOM, and encourage others — family caregivers, geriatric care managers, clinicians, or really anyone who has had personal experiences with end-of-life situations in the US — to submit comments as well.

The best reports, after all, result from the academics’ expert opinions being informed by the experiences of those of us in the trenches, trying to navigate real end-of-life situations.

My comments on Better End-of-Life Care for Older Adults

Below, I share the comments that I’m submitting in response to the IOM’s questions.

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My comments on Better End-of-Life Care for Older Adults

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