Advance Care Planning: Make Some Plans On National Healthcare Decisions Day

Every year, April 16 marks the occasion for National Healthcare Decisions Day, a recognition of the importance of thinking about your end-of-life care decisions, documenting them on state-approved forms, and sharing your wishes with loved ones and health care providers, to ensure that your wishes are known and respected regarding how you want to be treated during a serious illness or at the end of your life. Started by The Conversation Project, this day “exists to inspire, educate, and empower the public and providers about the importance of advance care planning.” If you’ve already appointed someone to be your health care proxy or health care power of attorney and documented your decisions in some kind of advance care planning form, you’re to be congratulated, because so many of us have not (but make sure you regularly review your plans to confirm they’re still consistent with your wishes). According to a recent survey conducted by The Pew Research Center, about 30% of US adults say they have created a living will/advance health care directive, though that number climbs to closer to ⅔ once a person reaches their 70s (and to almost 80% once a person reaches their 80s or beyond). According to this survey, women in their 70s are most likely to have had discussions about their end-of-life wishes with their adult children, while men ages 65-74 are the least likely to have had such conversations. 

What are the reasons why people hesitate to have these conversations and document their wishes? Of course, few of us want to contemplate a time when we are seriously ill, incapacitated, can’t speak for ourselves, or are no longer able to participate in consultations about treatment options. Yet a research study published in JAMA Open Network last November found that the arrival of a serious illness is an important motivator for patients and families to conduct these conversations. Seriously ill patients worry that their surrogate decision makers need access to treatment options and need to make the best or right decisions for them. In fact, in this research, ⅔ of people with serious illness spoke with close family or friends about their medical wishes and who should serve as surrogate decision makers. Ironically, however, documentation of these wishes, despite the conversations, appears to be woefully inadequate. Patients need to understand the importance of not only talking but also putting in place the legal mechanisms to ensure their wishes are followed. For a resource that links you to all of the legal forms for every state, reach for a pen and read here.

What else could motivate adults to have these important discussions and to document the decisions made? The bottom line for many is that a lack of discussion and documentation will not only mean your wishes may not be known or followed, but loved ones will likely be left in a lurch. As many have said, “If you have people you love, you’re going to want to do this for them.” That is, your close friends or loved ones will want to help you in your time of need, but without the legal authority, they may not be empowered to make decisions on your behalf, even if you’ve had conversations with them. You don’t want a health care crisis to be made even worse if the people you love cannot support you and be there for you. As one attorney stated bluntly, “The most loving thing that families can do for each other is to set out clear legal authority. You’ll never regret having a plan, but you will deeply regret being unprepared.” In fact, as a recent post in Brain & Life made clear, not only should patients create advance care planning documents, but their primary caregivers should as well. It’s not uncommon, especially among primary caregivers of persons with dementia, for the caregiver herself to become ill, and even pass away, before the care recipient. Creating an advance care plan that covers both the caregiver and the care recipient is another act of love that can help avoid further crisis should an unplanned caregiver emergency occur.

Nonetheless, these are not easy conversations to have, nor simple decisions to make. Choosing someone you can implicitly trust as your health care proxy and empowering them with potential life and death decisions is a weighty responsibility, not to be given lightly (some argue, however, that this is the primary and perhaps only real advance care plan you need in place). Getting good guidance from your health care providers or from other organizations that specialize in this type of decision-making can make all the difference between failure and success. As referenced earlier, The Conversation Project is a valuable resource in helping structure and guide these conversations, and supporting you as you wind your way through the important considerations that go into advance care planning. However, there are now also many online platforms, often without charge, that you can turn to for help and guidance. For starters, you may want to take a look at PassagePlans.com or Everplans. Many now also choose to organize and plan for their digital life in advance, and for that, you may want to turn to Eazewell. We at agebuzz also have significant information available on advance care planning for you to read and consider. So take note: National Healthcare Decisions Day is an important reminder for yourself and your loved ones to plan in advance, in order to keep the chaos out of end-of-life care and decision-making.