It can be overwhelming to be asked to make healthcare decisions for someone who is dying and is no longer able to make his or her own decisions. It is even more difficult if you do not have written or verbal guidance (see Advance Care Planning: Healthcare Directives). 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 since the documents may not address every situation you could face.
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. This is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible.
If you are making decisions for someone at the end of life and are trying to use one of these approaches, it may be helpful to think about the following questions:
- 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 might we expect to happen in the next few hours, days, or weeks if we continue our current course of treatment?
- 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 helpful. 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. 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.
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 healthcare choices before becoming unable to do so. That is not unusual, but it makes sense to choose one person to be the contact when dealing with medical staff. The doctors and nurses will appreciate having to phone 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 consider a mediator, someone trained to bring people with different opinions to a common decision.
In any case, as soon as it is clear that the patient is nearing the end of life, the family should try to discuss with the medical team which end-of-life care approach they want for their family member. That way, decision making for crucial situations can be planned and may feel less rushed.
Read more: https://www.nia.nih.gov/health/understanding-healthcare-decisions-end-life
For More Information About Healthcare Decisions at the End of Life:
Association for Conflict Resolution
Family Caregiver Alliance
Society of Critical Care Medicine
This content is provided by the National Institute on Aging (NIA), part of the National Institutes of Health. NIA scientists and other experts review this content to ensure that it is accurate, authoritative, and up to date.