When it comes to advance care planning, for most people, it is too early until it is too late. Do not be too late. On this National Health Care Decisions Day (April 16), I urge you to do two important things: Select a health care agent (i.e., a person with the legal authority to make health care decisions on another's behalf should they lose the ability to do so themselves) and share your wishes about future health care with that person. Those wishes should be based on what matters most to you, and it is important that your agent understands how your values and beliefs could inform your preferences for future health care. Write down the key points of these conversations (ideally in an Advance Health Care Directive), and discuss this information with your doctor and other relevant members of your care team. This process takes time and may be a bit uncomfortable at first, but it wields enormous benefits, three of which are detailed below.
*Note: please keep the following hypothetical situation in mind as you continue reading
On the way home from a work out at the gym you are involved in a terrible accident. Although you were completely healthy less than six hours ago, you arrive to the emergency room unconscious. After an assessment that included consultation with neurology specialists, your doctors determine there is a 50 percent chance they could save you, but doing so would require a risky series of surgeries, and if you make it through, you would likely be left a quadriplegic without the ability to speak. If you are to have any chance at surviving, the care team must begin the first surgery within a few hours. Alternatively, if surgery is forgone, medication could be administered to keep you comfortable and out of pain until you pass away -- which would likely occur within a few days. The hospital was able to get in touch with your wife of 35 years. She and your two grown children are now in the waiting room. The doctors call a family meeting, explain the situation, and ask your wife how they should proceed. What would you want her to say? Would she know?
Three Reasons to Have Advance Care Planning Conversations
1) For Yourself: Rarely do people leave what they are eating for dinner up to chance, let alone more important things like their future finances. Thus, it is a bit befuddling that the vast majority of Americans are leaving their future health care treatment and subsequent quality of life open to chance. Although individuals cannot know if they will ever lose the ability to speak for themselves, everyone can take steps to make sure that they would still receive health care that supports their goals for how they want to live their lives. Advance care planning is a highly empowering process. It helps to ensure you would get the type of care you want -- whether that is the most aggressive care possible or comfort care only -- in even the hardest to imagine of situations. As the hypothetical scenario above illustrates, advance care planning is about much more than specific health care treatments; at its core it is about what makes life worth living. A decision so sacred and highly personal should be driven by the person whose life it impacts.
2) For Your Loved Ones: Research shows a higher prevalence of stress, anxiety, depression and even post-traumatic stress disorder in surviving family and friends when they are forced to make life or death decisions on behalf of their loved ones in the absence of prior and well-documented advance care planning conversations. Protect those that you care about most by relieving them from this burden. The only "right answers" for health care agents who are forced to make treatment decisions in tragic situations are those that were discussed, clearly communicated and documented beforehand. Documentation is especially important as it provides an element of certainty that helps prevent heated disagreements during highly emotional times that could tear families apart.
3) For Future Generations: Much of health care's high costs are attributed to end-of-life care, where the price of long and drawn out intensive care unit ("ICU") stays and aggressive life-prolonging treatment are extremely high. It would be one thing if we were certain that everyone wanted this type of care, but generally speaking, we have no real idea what people want. In fact, the little we do know suggests most people do not want the most aggressive care (which is the default option). The vast majority of Americans say they want to die at home, yet a study out of California shows that only 32 percent do. In other words, the health care system often administers treatment to people that they do not want, and at a great cost to society. It's not that you should partake in advance care planning because it lowers costs; it's just that when people make their own health care choices, share them with their health care agents, and document them in advance directives, costs tend to be much lower. If comprehensive advance care planning was undertaken nationwide, it is likely that both the quality of American health care would be better (because people would be getting more personalized care that they want) and expenditures would be less. This is especially important not only to ensure the sustainability of America's health care system, but also to safeguard appropriate investment in other important areas that will support and protect a bright future like education, social services, science, and defense.
Not a One-Time Event
People change over time, and so do their attitudes about health care. For example, your 30-year-old self may have different ideas about what makes life meaningful vs. your 90-year-old self, which may translate into different preferences about CPR. Thus, it is important to revisit advance care planning throughout your life, and while you may do so whenever you want, the "5 Ds" are especially good times: every decade, upon divorce, after the death of a loved one, at the time of a new diagnosis, or when a major decline in health occurs.
How to Get Started
An increasing number of health care systems are offering comprehensive advance care planning programs. Ask your doctor if this is something available to you, and if it is not, tell them it should be. Other good resources that help to guide and facilitate these conversations include online tools like The Conversation Project and Death Over Dinner. There is also a great and inexpensive card game called My Gift of Grace that puts advance care planning in a comfortable and familiar context (e.g., a family game). However you choose to have this conversation, it will be empowering for you, a gift to your loved ones, and beneficial to your community at large. And while at face value these issues may seem hard to talk about, once you get started, you'll likely find yourself engaged in an intimate conversation with people you really care about, something precious in of itself that is not too common in today's world.