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.
What is advance care planning?
Although many people have heard of advance directives and living wills, I’ve found that often people aren’t quite sure what we doctors are talking about when we mention “advance care planning.”
You can, of course, find definitions via Google, and here is one that I like, from the National Institute on Aging:
“Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive.”
In other words, “advance care planning” refers to a whole process of reflection, learning, and discussion with others, as well as to the creation of an advance care directive.
Here’s what I often tell the patients and families that I work with:
“We can and should hope the best. And, we should prepare for the likely, as well as the quite possible.”
Then, I try to help people with the following four key steps of advance care planning:
1. Understand current health conditions, and how they are likely to progress. This means learning about an older person’s chronic conditions, understanding how they might progress and worsen, and having a sense of what kinds of health crises and declines you might face in the future.
2. Reflect on values and preferences for future care. Many people find that talking to friends and family helps them think through their values, when it comes to the type of care they’d want during a health crisis, or a possible end-of-life situation. It’s also very important to consider “Who do I want to have making medical decisions on my behalf, if I become too sick to decide for myself?
3. Communicate preferences in writing, and in conversation. Although the ideal is to complete a legal document such as an advance directive, or POLST form, any information put in writing (for instance, a dated letter to one’s family and primary care doctor) can be very helpful later on. I also encourage people to talk to their care circle about their preferences; this gives people an opportunity to ask questions and reduces the chance that they’ll be surprised down the line by whatever’s been documented.
4. Re-assess preferences and plans periodically. People’s needs, wants, and preferences often change over time, as their health situation and life situations evolve. So it’s important to regularly revisit the advance care planning process. This is true even if an older person has lost the ability to make major medical decisions, as some care planning documents (such as POLST) can be revised or completed by a surrogate decision-maker.
5 Tips to Help With Advance Care Planning
Now that we’ve reviewed the basics of advance care planning, I’m going to share a few specific things that you can do, to help an older person improve his or her planning for health crises and end-of-life care.
1. Think about planning for the last stages of life, rather than the last moments of life. I’ve found that people often equate advance care planning with thinking about “end-of-life.” For many, this means thinking about how we hope we will die. This is an important issue to think about. However, many serious healthcare decisions must be made beforehand, in the weeks, months, or even years before an older person dies.
By expanding the planning frame to think about last stages of life, rather than last moments, you’ll improve the chances of having plans that help an older person, a family, and a clinical team navigate the healthcare dilemmas that often come up.
The book “Knocking on Heaven’s Door,” by Katy Butler, does a wonderful job of illustrating common healthcare dilemmas that family caregivers face, in the last few years of an aging parent’s life. I also like “Handbook for Mortals,” written by geriatrician Joanne Lynn and her colleagues.
2. Learn to ask doctors about what kinds of health crises and declines to expect. This is especially important if your loved one has a progressive chronic condition, such as dementia, heart failure, or chronic obstructive pulmonary disease (COPD).
Studies have repeatedly found that many patients and families have not been told what to expect as these chronic conditions progress. So, don’t assume the doctors will tell you, if one of these conditions has advanced to the point that there’s a high chance of dying within the next year or two.
However, if you ask “What kinds of health crises should we expect?” when it comes to a given condition, many doctors will be able to share useful information. You may also want to look online for additional information from medical experts, as well as from other patients and caregivers. For instance, here’s a Caring.com story I wrote about an older man hospitalized with advanced COPD, who asked me what would happen to him.
3. Find tools to help an older person through the process of reflection. Thinking through one’s wishes, preferences, and values is no small thing. We are, after all, talking about life and death and the many things that often lie in between!
Fortunately, several tools exist online to guide aging adults through this process. My personal favorite is PREPARE, a web-based planning tool developed by geriatrician Dr. Rebecca Sudore. (You can find it at PrepareForYourCare.org.)
I like PREPARE because it’s very easy to use, and it guides aging adults through 5 key steps:
- How to choose a medical decision-maker?
- How to decide on what matters most in life?
- How much flexibility to give your decision-maker?
- How to tell others about your wishes?
- How to ask doctors the right questions about your medical care?
Another tool that I like quite a lot is the American Bar Association’s Toolkit for Health Care Advance Planning. The Conversation Project’s Starter Kits are very popular as well.
Now, a tool such as PREPARE was not designed for use by family caregivers who have taken over the medical decision-making for someone, such as for an older loved with dementia. However, if this is your situation, I would still encourage you to try using these tools. They can help you reflect on what your loved one might feel is important now, or what your loved one would’ve said in the past.
Note: If you’ve become the main medical decision-maker for someone else, you should be regularly addressing advance care planning. Doctors, after all, will need guidance from you next time a medical crisis comes up.
4. Ask the doctors to help you think through goals of care. Medical care — especially in the hospital — often places the highest priority on the goal of extending life and minimizing the chance of dying.
However, there are other goals of care to consider. These include relief from pain and suffering, as well as the ability to participate in one’s daily life.
In most cases, we can and should provide care that addresses all three fronts: longevity, comfort, and function.
However, in aging adults who have advanced chronic illnesses, we often find ourselves facing trade-offs. For instance, a hospitalization to try to treat and reverse an acute illness will impose a certain suffering on an aging person, especially if she has previously said she is “sick of going to hospitals.”
Thinking through and trying to articulate goals of care can help align medical care with an older person’s situation, preferences, and values. Here’s another example: once the nonagenarian Mr. H was diagnosed with metastatic colon cancer, he and his family decided the goals of care would be to maintain comfort, function, and quality of life for as long as possible. Based on those goals, we decided a practical strategy would be to try to treat infections that seemed easily reversible.
To discuss goals of care, start by asking the primary care doctor, or another clinician who knows your older loved one well. Your doctors should know what your family is hoping for, and can help you understand how the current medical situation affects your options for working towards your goals.
However, bear in mind that many doctors have not received training in discussing goals of care, and may be unsure of how to help you with this. If your own doctors seem to struggle with this, consider asking to speak to a clinician with training in palliative care or geriatrics.
5. Prepare to face dilemmas and uncertainty. I have noticed that occasionally, people think that going through a process of advance care planning means that everything will run like clockwork once a crisis hits.
“But there’s a POLST form signed!” a far-away daughter once exclaimed in frustration, when I called her to talk about the latest health dip affecting her elderly father with dementia.
Well, yes. There was a POLST, and there was an advance directive. And they provided very useful information on what the patient, and later his daughter (who had signed the POLST) had indicated were the medical priorities.
Yet, in the moment, those of us providing hands-on care to this elderly man had to figure out just what to do. There were a few options to consider, each with possible benefits and likely burdens. And none was clearly the right fit with the guidance provided in the POLST.
This situation, in which none of the available options is clearly the right choice, is very common when it comes to health crises in older adults.
Despite this, advance care planning is very important and helps quite a lot, because it provides a foundation upon which family caregivers and clinicians can better problem-solve when crises come up. (Older patients themselves are also often part of this problem-solving, but very often are too sick or impaired to make medical decisions.)
It is, of course, stressful for older adults and families to face dilemmas and uncertainty during a health crisis. But studies find that prior advance care planning does reduce the stress that people endure, and can also reduce the chance of guilt and post-traumatic stress disorder in family caregivers after a loved one dies.
I realize that I’ve provided a lot of information in this post, and I know that addressing advance care planning often feels overwhelming to aging adults, and families.
I also know there is much much more to consider, when it comes to preparing for health crises and the end-of-life. I have focused on the medical aspects of advance care planning in this post, but of course, there are important issues related to relationships, emotions, and spirituality, just to name a few.
Still, I hope this information will be of some help to you.
Please post any questions or comments below, I would love to hear from you.
Kathleen Kauth says
I am a mediator with a focus on eldercare. I try to educate people well before the time comes of the need to start the conversations about end of life planning. Once a crisis happens, the stress and conflict levels increase dramatically. I loved the part of this article where you identify end of life vs. the end moments. That is a very helpful reframe.
Jenny Linden says
What is the difference between Advance Care Planning and End of life Planning?
Nicole Didyk, MD says
That’s a good question. Advance Care Planning can include End of Life Planning, but can also include planning for other situations as well (for example, planning a move into a long-term care home). The website Advancecareplanning.ca is Canadian but has some good information that would be universally applicable.
Ann Cook says
Dr. Kernisan, this is an excellent summary of the need for an advance directive and the essential elements/conversations for a meaningful AD. I work as a consultant in advance care planning and I have reviewed many websites and articles. You have provided a succinct overview and I like your tips for talking with the physician. I read your blog all the time.!
Thank you for your work
Leslie Kernisan, MD MPH says
Thank you, I’m so glad you find it helpful!
Bob Fenton brings up an interesting, if not disturbing, point. I would be disappointed if I had taken the trouble to make my desires for end-of-life care known, then have them ignored by the people I trusted to make my wishes happen.
Still, I think having such documents on hand is better for me than not having them. At least there is a chance my wishes will be honored. Mr. Fenton’s note reminds me to do some additional “convincing” of my care givers beforehand.
I think there may be some bracelets that instruct medical care providers not to resituate. (Maybe a tattoo across the chest would do it?) Seriously, do those bracelets work?
Leslie Kernisan, MD MPH says
Yes, I generally encourage people to have as much conversation as possible with their families. Even those who are not designated durable power of attorney often influence medical care, by supporting or opposing the decisions of the DPOA.
Interesting question re DNR bracelets! I took a quick look in the scholarly literature and did not find any studies.
I found this page from a vendor, They have a paragraph on DNR bracelets. I suppose wearing one would be a first responder’s clue that an advanced care directive or POLST might exist.
Bob Fenton says
Very good topic! I am upset about the way doctors, hospitals, and even hospice ignore documents on file. I have seen friends who have expressed to me that if they had heart failure, they did not wish to be revived. They had orders on file to not revive. Yet in two out of three cases, they were shocked back to life. Both are in their 90’s and and even after they had been revived could not get their wishes adhered to by certain family members, the hospital, and their doctors.
I know that certain of my family members will not adhere to my wishes and won’t even talk to me about it. They just say that they will push for their wishes.
At the age of 72, I do not like being disrespected this way.
Leslie Kernisan, MD MPH says
Thanks for raising this important point. It’s true that even when an older person has taken the time to document his or her wishes, they may not be carried out 🙁
Sometimes this is because clinicians aren’t able to access the right documents at the right time, and sometimes this is because family or the durable power of attorney for healthcare object. (Hence it’s important to choose a surrogate carefully, and try to have conversations *before* emergencies hit.)
There are also some doctors who refuse to scale back “aggressive” medical care, but that’s becoming less common, fortunately.