Practical information for aging health & family caregivers
In another post, I’ve 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.
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.
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?
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:
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:
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…]
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:
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…]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.
[Read more…]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.
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:
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.
Below, I share the comments that I’m submitting in response to the IOM’s questions.
[Read more…]
This work by Leslie Kernisan MD & Better Health While Aging LLC is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Based on a work at BetterHealthWhileAging.net.