By Rick Weber
Advanced care planning has become a more salient issue than ever before because older adults are occupying a larger percentage of the population.
In 2000, older adults made up only about 12.4% of the total population, compared to nearly 19% today. And by 2034, older adults are expected to outnumber children for the first time in the nation’s history, according to the U.S. Census.
While advanced age is associated with chronic-disease functional decline, science and healthcare continue to evolve and people are sometimes able to push back the onset of chronic diseases and live longer, so it is worth asking questions about how we can both add years to our life and quality to our years.
“However, at a certain point, despite our best personal lifestyle change efforts and advances in science and healthcare, there are limits to what can be done to extend life—and hard choices need
to be discussed openly and honestly,” says David Hage, Assistant Professor and Program Director in the Master of Social Work (MSW) program at Florida Gulf Coast University’s Marieb College of Health & Human Services and an affiliate faculty member in FGCU’s Shady Rest Institute on Positive Aging.
“Having worked in healthcare for so many years, I saw that people who plan ahead about their end-of-life wishes retain more options and tend to receive care more in alignment with their own values, beliefs and goals. I feel it is an imperative to champion the cause of advanced care planning to help people learn how to get access to care they would prefer where possible and to help others reduce unnecessary experiences of suffering where possible. There is always something we can do to help others, even when they are facing the end of life.
“I count it a great a great honor to be a part of someone’s end-of-life journey. It can be sad to watch someone deteriorate, but it can also be life-changing to be able to demonstrate true empathy and help someone reduce the experience of suffering and finish their journey in a way that is concordant with their own wishes.”
And it isn’t just for older adults.
“I want to make clear that facing an end-of-life issue can unfortunately happen at any age,” Hage says. “It is often recommended to begin end-of-life care planning conversations at age 16 when people begin to drive, and their morality risk increases.”
It’s National Hospice & Palliative Care Month—a perfect time to have high-quality advanced care planning conversations. Here’s how:
Choose an appropriate medical decision maker (health care proxy).
“People should consider a wide array of issues when choosing a surrogate decision maker. One of the most important qualities in someone that might help in deciding who to pick is that they are trustworthy and will honor your values and wishes. Stress tolerance, willingness to advocate, availability, physical proximity, skills (e.g., health vs. financial aptitude), and family dynamics should all be considered. Sometimes a family member is a good choice and sometimes your neighbor might be. Everyone’s life circumstances, values, resources and desires can vary. It’s also relevant to know that you can update your decision maker and advanced care planning documents. It is important to periodically re-review documents. If a surrogate passes or becomes ill, you might need to make a change. It also doesn’t help to have these documents locked in a safe. Your doctor, lawyer and family should all retain copies, so you have the support you need when you need it.”
Decide what quality of life means to you and what is needed to support it (that is realistically possible).
“Quality of life means many different things to each person. One of the most common preferences is not to suffer, especially related to pain or shortness of breath. These are medical issues a qualified palliative care doctor, your PCP, or specialists can help you with. For others, quality means living in congruence with values—and that can look different related to what people hold true or valuable, including religious and cultural differences. Most people also want to be surrounded by people they love towards the end. This is why early planning is important, so people can clarify what is important in their lives. Sometimes it might be as simple as a bite of a last preferred dish or maybe having a conversation to attend to unfinished business before it’s too late.”
Choose the level of flexibility you want to assign your surrogate decision maker.
“This will vary in each case. For example, if your surrogate is competent and aligned with your wishes, because they are a nurse or CPA, for example, maybe you want to allow them more autonomy to make decisions as they have both expertise and alignment with your wishes. Maybe a more prescriptive reduction of decision making could be helpful to reduce moral burden on a decision maker or if you trust the surrogate, but aren’t sure how they might react under stress, etc. These decisions should be made carefully, can prevent unwanted experiences, and can help reduce the potential for abuse. If someone has the capability to make decisions, they may also change decision makers or care preferences over time for various reasons.”
Share/document your wishes with loved ones and your medical team (and also keep it accessible for emergencies).
“This is critical for many reasons. Firstly, there are legal, health-related consequences to not knowing if you have an advanced care planning document. For example, if first responders are unsure of your wishes, they often have to call medical command at the ER for guidance and often have strict legislative requirements to follow. Typically, if a health professional doesn’t have documentation of your wishes, they will provide life-saving measures, which may be great, but not if you want to be a no-code. Your family/health care provider should have copies to be able to help when and where you need it so decisions are made in the way that you want. Many people also keep a copy on their refrigerator with magnets in case they need Emergency Medical Services support.”
Florida Gulf Coast University
Marieb College of Health & Human Services
10501 FGCU Boulevard South
Fort Myers, FL 33965
(239) 590-1000 | fgcu.edu