End-of-life care1 is the term used to describe the support and medical care given during the time surrounding death. Such care does not happen only in the moments before breathing ceases and the heart stops beating. Older people often live with one or more chronic illnesses and need a lot of care for days, weeks, and even months before death. Providing care at the end of Life: 12 Questions to Ask seeks to give the caregiver useful information during these difficult times.
When a doctor says something like, “I’m afraid the news is not good. There are no other treatments for us to try. I’m sorry,” it may close the door to the possibility of a cure, but it does not end the need for medical support. Nor does it end the involvement of family and friends.
There are many ways to provide care for an older person who is dying. Such care often involves a team. If you are reading this, then you might be part of such a team.
Understanding Healthcare Decisions at the End of Life2
It can be overwhelming to be asked to make health care decisions for someone who is dying and is no longer able to make his or her own choices. It is even more challenging if you do not have written or verbal guidance (see Advance Care Planning: Healthcare Directives3 ). 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.
- 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.
12 Questions to ask the Doctor
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?
Have Someone with You when talking to Medical Staff
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, perhaps 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 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 a 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.
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