Healthcare Choices [Checklists]
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It can be overwhelming to be asked to make health care decisions for someone who is dying and no longer able to make his or her own decisions. It is even more difficult if you do not have written or even verbal guidance (see pages 58-61). How do you decide what type of care is right for someone? Even when you have written documents, some decisions still might not be clear.
Two approaches might be useful. One is to put yourself in the place of the person who is dying and try to choose as he or she would. That is called substituted judgment. Sheila’s ninety-year-old mother, Esther, was in a coma after having a major stroke. The doctor said damage to Esther’s brain was widespread and she needed to be put on a breathing machine (ventilator) or she would probably die. The doctor asked Sheila if she wanted that to be done. Sheila remembered how her mother disapproved when an elderly neighbor was put on a similar machine after a stroke. She decided to say no, and her mother died peacefully a few hours later. Some experts believe that decisions should be based on substituted judgment whenever possible, but decision-makers sometimes combine that with another method.
The other approach, known as best interests, is to decide what would be best for the dying person. Jim’s father, Sam, is eighty and has lung cancer, as well as advanced Parkinson’s disease. He is in a nursing facility and doesn’t seem to recognize Jim when he visits. Sam’s doctor suggested that surgery to remove part of a lung might slow down the course of the cancer and give Sam more time. But, Jim thought, “What kind of time? What would that time do for Dad?” Jim decided that putting his dad through surgery and recovery was not in Sam’s best interests.
If you are making decisions for someone at the end of life and trying to use one of these approaches, it may be helpful to think about the following:
- Has the dying person ever talked about what he or she would want at the end of life?
- Has he or she expressed an opinion about how someone else was being treated?
- What were his or her values in life? What gave meaning to life? Maybe it was being close to family—watching them grow and making memories together. Perhaps just being alive was the most important thing.
As a decision-maker without specific guidance from the dying person, you need as much information as possible on which to base your actions. You might ask the doctor:
- What can we expect to happen in the next few hours, days, or weeks?
- Why is this new test being suggested?
- Will it change the current treatment plan?
- Will a new treatment help my relative get better?
- How would the new treatment change his or her quality of life?
- Will it give more quality time with family and friends?
- How long will this treatment take to make a difference?
- If we choose to try this treatment, can we stop it at any time? For any reason?
- What are the side effects of the approach you are suggesting?
- If we try this new treatment and it doesn’t work, what then?
- If we don’t try this treatment, what will happen?
- Is the improvement we saw today an overall positive sign or just something temporary?
It is a good idea to have someone with you when discussing these issues with medical staff. Having someone take notes or remember details can be very useful during this emotional time. If you are unclear about something you are told, don’t be afraid to ask the doctor or nurse to repeat it or to say it another way that does make sense to you. Do not be reluctant to keep asking questions until you have all the information you need to make decisions. Make sure you know how to contact a member of the medical team if you have a question or if the dying person needs something. You may want to get pager numbers, email, or cell phone numbers.
Sometimes the whole family wants to be involved in every decision. Maybe that is the family’s cultural tradition. Or, maybe the person dying did not pick one person to make health care choices before becoming unable to do so. That is not unusual, but it is probably a good idea to choose one person to be the spokesperson and the contact person when dealing with medical staff. The doctor and nurses will appreciate answering questions from only one person. Even if one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If you can’t agree on a care plan, a decision-maker, or even a spokesperson, the family might need to hire a mediator, someone trained to bring people with different opinions to a common decision. (See To Learn More on page 46.) In any case, as soon as possible after the doctor says the patient is dying, the family should try to discuss with the medical team what approach to end-of-life care they want for their family member. That way, decision making for crucial situations can be planned and does not have to be done quickly.
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Source:
National Institute on Aging
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