Since 2008, April 16th has been designated as “National Healthcare Decisions Day” (NHDD).
It’s an initiative meant to “inspire, educate and empower the public and providers about the importance of advance care planning.”
In other words, National Healthcare Decisions Day is meant to get you to plan for your future…a future time during which you might be ill and others — most likely your family — will have to make decisions about your healthcare.
This is not a particularly unlikely scenario. Between the present-at-all-ages possibility of being in a bad accident and the increased likelihood of illness as one ages, you’d actually have to be quite lucky — or unlucky, depending on how you see it — to reach the end of your life without anyone else ever having to make a medical decision on your behalf.
Still, studies and surveys generally find that many of us have not taken the needed steps to “make our wishes known.”
And even among those who have “made their wishes known,” there’s usually more to it than they realize, and they often have skipped an important piece of the process.
Now in general, older adults do address advance care planning more often than younger people do.
But, a recently published study found that in a 2012 survey of Medicare beneficiaries, only 38% reported having addressed three key parts of advance care planning (having an end-of-life conversation, designating a health power of attorney, and completing a living will).
We can and should do better. Because when we address advance care planning, we not only benefit ourselves, but we also provide an important service and gift to our family and loved ones.
Making medical decisions on behalf of someone else is often extremely stressful. I found this out the hard way many years ago, when my father fell suddenly very ill. (I share this story in a related podcast episode, which you can find here.)
By making an effort to think through “your wishes” — your values and priorities, really — you can make things much easier for your family, should they ever be called to make decisions for you.
And if you think you’ve already taken care of this: you may not have done it as thoroughly as possible the first time around, and you may well be due for a refresher.
So again, for your sake and for that of your loved ones, don’t assume you’re done!
Instead, use April and National Healthcare Decisions Day to ask yourself the following five questions.
5 Questions to Ask Yourself on National Healthcare Decisions Day
1.Have I legally chosen someone to be my surrogate medical decision maker?
Why this matters:
If you ever become sick, you might well lose the ability to make medical decisions for yourself. If this happens, health providers will want to know who is your legally-designated surrogate decision maker.
People sometimes assume that you have to be deathly ill to lose the ability to make medical decisions, but that’s not at all true.
In fact, it’s quite common for older adults to become mentally impaired while hospitalized; one study published in 2014 found that within 48 hours of hospitalization, 47% of older adults required decision help from surrogates.
Of course, it’s also common for older adults to become unable to make medical decisions before dying. A 2010 study found that in about 42% of deaths, decisions about medical treatment had to be made in the last days of life. And in those situations, the older person lacked decision-making capacity 70% of the time.
If you don’t legally designate a particular person, most states will allow your spouse, or your next-of-kin, to make decisions on your behalf. But it’s generally better to have specified someone in particular. This can spare a family confusion about exactly who should be making decisions if the need arises.
What to do:
- If you have not legally designated someone to be your healthcare decision maker, now is the time to start thinking about it.
- You can get good guidance on how to choose a good person for this role via the PrepareForYourCare.org website.
- Another good resource is available at the Conversation Project website, it’s called Choosing/Being a Healthcare Proxy.
- The ideal surrogate decision-maker is someone who will try to make decisions in accordance with what he/she thinks you would want for yourself (instead of what he/she would want for you). This person should also be willing and able to ask health providers questions on your behalf.
- Give yourself time to think about who would be a good surrogate, and be sure to talk to the person — and perhaps other family members — about taking this role.
- If you have legally designated someone to be your healthcare decision maker, congrats! But you’re not off the hook, I have more questions for you below.
2. Have I thought about my wishes and preferences for my medical care, if I were too sick or too mentally disabled to make decisions for myself?
Why this matters:
Your healthcare surrogate, your family, and your doctors all want to help you get the medical care that is right for you and your preferences.
But what is “right” for you? They may well have trouble deciding on this, unless you’ve provided them with some useful guidance.
And you might well have a hard time providing this guidance; many people find that this is a hard subject to think about and talk about.
Fortunately, some simple tools can make it much easier for you to think through what your values and priorities would be, in the event of a health crisis or life-threatening emergency.
What to do:
Several tools have been developed to help people think through what they might prefer, if they could not make their own healthcare decisions.
Here are some especially good ones:
- PrepareForYourCare.org: PREPARE is an easy-to-use program that uses video and straightforward language to help older adults think through issues related to advance care planning, including “Decide What Matters Most in Life.”
- Find the video series here. It is presented in five steps, each of which can be completed in 15 minutes or less. You can save your work as you go along, so it doesn’t all have to be done at once.
- The PREPARE website also offers a “talking” feature which reads the content out loud, so it’s accessible to people with very limited vision. The material is also available in Spanish.
- PREPARE also offers a printed workbook with questions, but the creators recommend using the video program for best results.
- The Conversation Starter Kit: These PDF conversation guides are created by the Conversation Project, a non-profit dedicated to helping people talk about their wishes for end-of-life care.
- The PDF guides are available in multiple languages.
- The site also offers a Conversation Starter Kit for families of people with Alzheimer’s and other dementias
- The Consumer Toolkit for Health Care Advance Planning. This set of worksheets from the American Bar Association’s Commission on Law and Aging is user-friendly and is designed to help an older person think through values and preferences related to advance care planning.
3. Have I discussed my advance care planning with my healthcare providers?
Why it matters:
It’s important to talk with your healthcare providers for several reasons.
To begin with, since they may well be directing or overseeing your medical care in the event of an emergency, you’ll want them to be aware of whatever your preferences and wishes are, for your future healthcare.
The other reason is that your health providers should be able to tell you what kinds of health decisions your surrogates might have to make on your behalf.
In other words, your health providers can tell you what kinds of health crises or declines to plan for. Understanding this can help you provide your surrogate decision-maker — and your clinicians — with better guidance.
What to do:
Make sure you have discussed your advance care planning with your usual clinicians. It’s best to do this before you finalize your advance directive. (But if you’ve already completed your advance directive, it’s ok! Talk to your clinician anyway. You can always revise your advance directive afterwards, if needed.)
- Let your health providers know what you have in mind for your preferences and wishes.
- Ask them if there are any particular health declines or crises that they think you might want to plan for.
Remember, it is okay — it’s strongly recommended, actually — to bring up advance planning with your health providers before you complete any legal paperwork.
If you have already completed a durable power of attorney for healthcare, or any other relevant paperwork, you should make sure your health provider has a copy.
4. Have I documented my wishes in a legally-suitable format?
Why it matters:
Once you’ve decided on your wishes, you’ll want to document them. You may want to record your thoughts in a journal, in a letter to your family, or even in a short video. (This can become useful to your family later.) But ultimately, it’s important to also document your wishes in a more legally-binding format, which should be compatible with your state’s laws.
As noted above, if you are designating a surrogate decision-maker, that’s done through a durable power of attorney for healthcare. Such documents are generally mandatory if you want someone who is not your spouse or next-of-kin to make decisions on your behalf.
A healthcare power of attorney is also useful for specifying which of your children or next-of-kin should be the decision-maker. (It can be hard to pick just one person but that’s what experts recommend. Doing so makes family disagreements over “what Mom wanted” — which are surprisingly common — easier to manage.)
If you want to specify your wishes for end-of-life care or other types of preferences for healthcare, that’s done in a living will, which is also sometimes called an advance directive.
(Technically, an advance directive is a legal document specifying your healthcare proxy and/or your wishes in the event of an emergency or life-threatening illness.)
What to do:
First and foremost, don’t stay stuck on this step for too long. Completing an advance directive shouldn’t require an attorney or a lot of expense, and in many states, a notary is not necessary if you have two witnesses.
And remember, as long as a person has the required decision-making capacity, an advance directive can be canceled or revised at any time.
To find an advance directive form valid for your state:
- If possible, I recommend using an “easy-to-read” advance directive. These are just as valid as a conventional forms in “legalese,” but are much easier to understand.
- The PREPARE website offers easy advance directives for several states here: PREPARE Advance Directives.
- The National Hospice and Palliative Care Organization also offers a list of state-specific advance directives here.
For people with advanced illness or who otherwise are likely to experience a life-threatening emergency within the next 1-2 years, you may also want to consider a POLST or MOLST (Physician/Medical Orders for Life-Sustaining Care). Learn more about POLST here.
5. When did I last review my advance directive? Have I reviewed it regularly, or after a significant change in health status?
Why it matters:
It’s essential to regularly review any documents you have completed in the past, to make sure that they still are a good fit for your family situation, your preferences, and your health situation.
For instance, people’s preferences and wishes regarding medical care and end-of-life care often change as their health problems evolve.
People are also sometimes influenced by their experience helping another person with health issues.
Relationships also change over time; the person who seemed right to be your surrogate decision-maker several years ago may no longer be your best choice, for a variety of reasons.
If nothing else, you’ll want to make sure you know what you’ve documented. (People often admit they are unsure when I ask them, because the documents were done years ago as part of an estate planning process, and they haven’t seen them again since!)
What to do:
Generally, you should review your advance care planning every five years or so, OR whenever any of the following occur:
- A significant health crisis (e.g. a hospitalization for illness)
- Diagnosis of a major new health condition (e.g. cancer)
- A significant decline in health or abilities
- A significant improvement in health or abilities (this does happen sometimes!)
- Diagnosis of a progressive condition expected to cause eventual incapacity (e.g. Alzheimer’s and other dementias)
- A significant change in family relationships (e.g. divorce, widowhood, loss of other close family members)
- A significant change in living situation (e.g. moving to a new state and/or more supportive living environment)
To review your advance care planning, you can follow these steps:
- Review the state of your health and chronic conditions with your usual healthcare providers.
- What health declines or health crises should you plan for? What kinds of decisions might your surrogate have to make on your behalf?
- Reflect on your values and preferences, and discuss with your family and surrogate decision-maker.
- Use PREPARE or a Conversation Project Starter Kit, to guide you through key values to consider.
- Try to discuss your preferences for any potential health crises or declines that your surrogate might have to navigate on your behalf. Trust me, your surrogate will be very glad you did this, if they ever have to step in.
- Review your existing advance directive and any other documentation.
- Does your existing documentation still seem like a good fit for your preferences?
- Is your currently designated durable power of attorney still a good fit?
- Update your advance directive and documentation if it seems needed.
- If you revise your documentation, be sure to let your surrogate decision-maker and all your health providers know, and provide them with copies of the most recent information.
Planning ahead is a gift that benefits you and your loved ones
I know it’s not easy to think ahead to a time when we might be dangerously ill or mentally incapacitated.
But it’s an effort worth making. It will help you get medical care in line with your preferences and values, when the time comes. And you will reduce stress and anxiety in those making decisions for you, by providing much-needed guidance.
So, be sure to ask yourself these five questions for National Healthcare Decisions Day:
- Have I legally chosen someone to be my surrogate medical decision maker?
- Have I thought about my wishes and preferences for my medical care, if I were too sick or too mentally disabled to make decisions for myself?
- Have I discussed my advance care planning with my healthcare providers?
- Have I documented my wishes in a legally-suitable format?
- When did I last review my advance directive? Have I reviewed it regularly, or after a significant change in health status?
You can also view my other articles on advance care planning here: Advance Care Planning & End-of-Life.
Have you had any key conversations this month for National Healthcare Decisions Day? How have you addressed advance care planning? I’d love to hear from you in the comments below.