Developing a Plan: Is It All up to Me?

If you are identified as the person who will make decisions for your loved-one, you may feel overwhelmed by this responsibility. This can particularly be true if and when clinicians are asking you to make a major decision, such as whether to change a major therapy or to discontinue some therapy that seems not to be working.

You may even feel that you are being asked to make a “life or death” decision. Indeed, assuming responsibility as the primary decision maker for a loved-one can be a heavy burden, but you should not feel as if you must make the decision alone. Physicians and other clinicians would not recommend a particular course of action if they did not think it was reasonable medically. They share in any responsibility for any decision that is made. You may also benefit from discussion and advice from family members, friends, and members of your community whom you respect, such as spiritual advisors.

If your loved-one is a clear-thinking adult, who wants to direct his or her care:

  • • Ask how you might be of any assistance. How involved, or not, does he or she wish you to be?
  • • Explore with your loved-one not just the specific decision before you, but the values and reasons underlying his or her approach to healthcare and healthcare decisions
  • • Consider commenting on how any decision might affect you and your family – both emotionally and practically
  • • Consider “what-if” scenarios:
    •    What if he or she could not make decisions - who should instead?
    •    Under what conditions, if any, would he or she want to change course? For example, if pursuing life-prolonging therapy, would there be any circumstance wherein he or she would prefer to “switch gears” to an approach more oriented toward maintaining quality of life as a primary goal?
  • • If your loved-one has not already done so, inquire as to whether or not he or she would like to complete an advance directive. Clinicians, especially social workers, should be able to help you with this.
  • • If he or she has completed or is completing an advance directive, we recommend your discussing the thinking and values behind your loved-one’s written preferences.

If your loved one is not a clear-thinking adult and you are responsible for making medical decisions:

  • • Review any advance directives or written statements by your loved-one regarding their wishes.
  • • If your loved-one is able to discuss their preferences, consider including them in the decision making process, adjusted as necessary to their ability and interest in participating.
  • • Think about your loved-one’s values and way of life. How he or she has lived in the past may provide a good clue as to what would be important to them, looking to the future.
  • • Listen carefully to the clinicians’ explanations of available options. It may help to consider the potential benefit, potential harm or risk of any option under consideration. You should also inquire as to what alternatives to the option might exist.
  • • Examine in your own mind what you think would be best for your loved-one. This may or may not be the same as what your loved-one or clinicians would say. If different, this is OK. Your perspective and opinion is still very valuable. Consider sharing this with others involved in the decision.
  • • Ask others close to your loved-one, as appropriate, for their opinions. While they may not be the principle decision maker, they may have strong opinions and feelings about what is right. Their lives may also be affected by whatever decision is made. Involving them may help you reach some consensus and relieve you of the feeling that it is all up to you.


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