The National Institute of Medicine has defined a good death as one that honors the wishes of the dying person. Advanced directives are the best way to insure that the cost of medical help remains under control and that your wishes are followed during the last months and days of life.
A good set of advanced directives covers everything from preferences about certain treatments to personal values about pain, self-care, place and services. They should also include a discussion of spiritual matters and what quality of life means to you. One example of a form that can guide your thinking is Five Wishes. Five Wishes is especially appropriate for those who wish a “natural death.” They define this as a death in which medical personnel leave nothing done or undone that might hasten one’s death.
The costs of the death system, from medical care to commemoration, are escalating and good care is going to be scarce and expensive. Today, one in ten adults is a caregiver and that number will escalate over the next two decades. Time Magazine (November 4, 2019) estimates that by 2030, there will be a shortfall of 151,000 paid care workers by the year 2030 and that number will balloon to 355,000 in 2040. It is critical to face these facts sooner rather than later to insure you have the best possible care and make your wishes about dying clear while you still can.
Every day in the United States, 10,000 people apply for Social Security. Within 10 years, 20% of the population will be over the age of 65. Most of these people will have died by the year 2040. That means that the rest of us will be affected by the death of someone close all too frequently over the next two decades. We all need to prepare for the loss of the postwar baby boom. If you are a part of this “silver tsunami”, the best thing you can is to have completed a set of advanced directives, yet only about a quarter of people over 75 have even given much thought to their own death.
Advanced directives begin with the specification of a healthcare agent. This is a person that you feel listens to you and that you trust to honor your choices when you can no longer make decisions. When your agent knows your wishes and carries them out, it averts unnecessary conflict between family members or friends and is a source of comfort to those who are bereaved. It’s important to realize that nearly half of people who are dying are unable to make decisions for themselves in the last few weeks of life. Of these, only 25% have even had a conversation about their wishes, much less have completed and filed advanced directives.
When my son-in-law developed terminal brain cancer last year, he refused to think about dying or to fill out the forms for advanced directives. He believed he could beat it and all he cared about was what the doctors could do next. Unfortunately, his brain swelled so badly during radiation and chemotherapy that the doctors could not even tell if the treatment was working and put him on high levels of corticosteroids, making him angry, irritable and depressed. He said he constantly felt like putting his fist through a wall. Although it was clear, he was unlikely to recover, he had still not made his preferences clear nor had he put them in writing until the day that a second seizure felled him in a parking lot and he arrived at the hospital unconscious.
We didn’t know if he wanted another operation (recommended by the doctors), a feeding tube or a respirator, all of which happened before we even arrived. If he had a set of advanced directives that had already been put on file with the hospital and were in his record, they would have known what his wishes were before we got there.
The burden of choices fell to his wife, who had been through an extremely difficult year and was caring for him at home. At that point, she felt unable to think herself and called a conference with his parents and other family to help her sort out the decisions. He was 46. Not knowing what he wanted when he could no longer make decisions caused great distress for his wife and family.
Advanced directives should cover four different matters:
- How much information do you want about your condition and prognosis? The evidence suggests that doctors tend to be optimistic in their prognoses. They overestimate the chance that treatment will work and underplay the difficulties of treatment. If you want to know everything about your illness, be aware that doctors can be unrealistic too.
- Where do you want to die? Would you rather be at home, in the hospital, a palliative care facility in a hospital or a nursing facility? Would you prefer a stand-alone hospice if one exists in your community? Before you answer, look at the article called dying at home on this website. Home hospice care does not include routine help with bathing, toileting, changing or any of the myriad tasks that are non-medical. You want to be sure your family has the right resources.
- What kind of palliative care do you want? In nearly all cases these days, pain is unnecessary at the end of life, but often a patient must suspend all treatment in order to receive appropriate comfort care. Treatment includes not only life-saving procedures like CPR, feeding, hydration and assistance breathing but also continued medication like chemo and the use of antibiotics. You can find a more detailed description of the choices you need to make in our book, Living Well, Dying Well There are also many good websites about advanced directives.
- What kind of commemoration do you wish for yourself? Choices here range from nothing at all to elaborate funerals and expensive gravesites, headstones and “eternal” care by the cemetery. You need to decide whether you prefer ground burial, cremation or hydroxylation (a new option). Burial at sea or in a green cemetery are also options. Check out the article on funerals and cremation for more information about how to handle the body and the cost of different arrangements.
The costs of the death system, from medical care to commemoration, are escalating and good care is going to be scarce. Today, one in ten adults is a caregiver and that number will escalate over the next two decades. Time Magazine (November 4, 2019) estimates that by 2030, there will be a shortfall of 151,000 paid care workers by the year 2030 and that number will balloon to 355,000 in 2040. It is critical to face these facts sooner rather than later and make the best possible decisions while you still can.