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Medical care at the end of life is in the news this week. Barbara Bush opted for palliative care in lieu of continuing curative care – she wanted to be at peace at home surrounded by the people she loved. This is also National Health Care Decisions Week – the time we should set aside with our family to discuss our health care choices at the end of life. In honor of both, I share my perspective as a physician and a financial planner on how to approach this difficult topic.
Live life fully
The first step to addressing end of life care is to think about it long before the end and to do your best to live a great life in the present. People who have lived fully without regret tend to have the most peace about their end of life.
Those with a load of unfinished business tend to “fight” to the end, not realizing that the fight often costs significant time, energy, money, and angst, and leaves them with no time or energy to finish their business. In their zeal to survive at all costs, they frequently forgo the important conversations that should occur before death, fearing those conversations will result in a quicker demise.
Determine what quality of life is important to you
The next step is to think about the quality of life that is important to you. This may change over time, but if you get into a situation where there is certainty you will never communicate ever again, do you really want your family and doctors to keep you going? Thinking through what you can’t live without and making certain everyone is on the same page with that decision will make it more likely your wishes will be honored.
We did a study in our practice a couple of years ago asking every client what activities were important for them to keep living in the event of a serious illness. There were four consistent answers – the ability to communicate with those around them, swallow food, maintain basic grooming skills, and have meaningful interactions. One client with a serious illness recently shared, “If I can no longer drink my wine in the evening, call hospice.”
Our clients document their quality of life choices and provide these to their health care surrogate, family, and medical professionals. This document is not a legal advance directive but serves as an adjunct to the legal advance directive forms. The health care surrogate can use this as a touchstone when making medical decisions.
For example, if you can no longer communicate and the doctor says to your health are surrogate, “Your mom needs a feeding tube to survive.” Your health care surrogate would ask, “Will this bring back mom’s ability to communicate?” If the doctor says it will not, don’t do the procedure. Ask for palliative care to provide comfort instead. Using quality of life measures is something everyone understands when deciding treatment.
We use this form in our practice when documenting quality of life discussions.
The most important decision is naming your health care surrogate. You must be certain they will follow through on your choices. Sometimes your spouse or child has difficulty stopping aggressive treatment because they love you so much, so they may not be your best choice. Your health care surrogate must be assertive and willing to stand up to other family members and the health care system. Arming them with your quality of life choices and sharing those choices with anyone who could be an impediment to your instructions will be the most likely path to success that your wishes will be honored.
Complete your living will. You can download a living will appropriate for your state at CaringInfo.org. Recognize that a living will only comes into play if you have an end stage disease, terminal illness, or persistent vegetative state. A living will does not apply if you have a major stroke that does not result in death, dementia, or any other medical “gray zone” that won’t qualify for living will status. This is why it is so important to have a good health care surrogate.
The end of life is a part of life, and we make it tougher than it needs to be. With thoughtful planning and open heartfelt conversations, hopefully the end of your life can come with a sense of peace and comfort.
