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On July 26, we posted about The Caregiver's Path To Compassionate Decision Making: Making Choices For Those Who Can't, a new book by Viki Kind, 216 pages, Greenleaf Book Group (July 1, 2010).

Viki Kind is a clinical bioethicist, medical educator and hospice volunteer. Her book, The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can't, guides families and healthcare professionals through the difficult process of making decisions for those who are losing or have lost the ability to think. She has also been a caregiver for many years for four members of her family.

Viki was kind enough to provide the following post for our blog:

The other day, I helped a woman who was struggling to make the right medical decisions for her husband who had suffered a traumatic brain injury. As a bioethicist, one of the first things I teach caregivers is to use Substituted Judgment. This ethical standard tells us that as the caregiver, you are supposed to consider all that you know about the person, what he or she has told you in the past, and what would be important to the person. Using this information, do your best to make the decision you think the person would make.

If you know the person's preferences or if there are written instructions, then you should follow what was stated. If you aren't exactly sure what he or she would want, ask yourself the following questions:

• What would the patient say if he or she could talk right now?
• Did the patient say anything to you or others in the past that indicates what he or she might want?
• What would the patient say is important to consider when making this decision?
• What personal, religious or cultural beliefs would be important to the patient in this situation?
• If the patient would say, “I want my family involved in making these decisions,” or “I would want to do what my family wants me to do,” then you can add the family’s opinions to the decision making process. If not, you should focus on what the patient would tell you.
• If I don’t know what the patient would say, whom should I ask? Did the person talk to his or her best friend about these issues?
• What do I not want to admit to myself or to the doctors about what the patient would say about this situation?
• What am I afraid to say aloud?
• What would I want, and how is that different from what the patient would want?

Not only will you need to ask yourself what the patient would want, you also need to ask the doctor lots of questions until you have enough information to make an “informed” decision. For a complete set of questions you can use when making medical decisions, go to my resource page on

For now, just remember that it is your responsibility to be fully informed before you make any decisions. After the treatment begins, check in to see how the patient is reacting to the treatment. Is the person doing better? Did the treatment help? Is it making your loved one worse? If the patient is not receiving the proposed treatment, how is she doing without it? If the treatment is not going as it should, you can change your mind and create a new treatment plan.

This is an ongoing process. You will need to continually reevaluate and adjust the plan as the patient’s condition changes. Your job won’t be done with one good decision. Your job as the decision maker is an active one, and you will need to continue to stay in communication with the healthcare team. And be careful. Too often, doctors, patients or caregivers get going in one direction and forget to change course when the plan stops working. Be willing to say, “We need to stop and make a new plan.”

It is a truly heroic act to be the decision maker. I honor and respect the courage it takes to make these difficult decisions.

Have a kind and respectful day.

Look for future posts by Viki in the near future.

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