Q: Recently my husband and I had a Financial and Health Care Durable Power of Attorney drawn up by a lawyer. Due to his serious illness we knew this was something that had to be done before he deteriorated any further. We discussed decisions related to advance directives when he first became ill. During a recent hospitalization when he was in critical condition the doctor overseeing his care asked him how aggressive he wanted them to be in providing treatment. His response was, “I want to live.” The same doctor and another specialist had a private conversation with me later and stated in their medical opinion there wasn’t much they could do and I may need to make other decisions in the near future. I am extremely conflicted at this point and don’t know how to handle this. Please give me some direction.
A: You have handled this appropriately so far by openly discussing end-of-life decisions with your spouse and taking legal measures to ensure your right to make difficult choices when the time comes. It appears the conflict that exists is between your husband’s desire to hold onto life and the views expressed by medical personnel. You are in a situation where you are your husband’s primary caregiver responsible for the oversight of his well-being and making sure all of his needs are being met. Additionally you are the person who ultimately will be asked to make painful choices as his condition declines. The two roles can end up being at odds with each other.
The availability of advanced medical treatment can be a double edged sword for someone with a chronic illness and no cure is possible. Prolonging life may be enough for some people while others have strong feelings about the quality of life being offered. Having a conversation about end-of-life issues when someone is first diagnosed is very different than the discussion that should be taking place as the disease or illness progresses. The tough conversation arises when medications or treatments may no longer benefit the individual.
One question is whether or not your husband completely understands his prognosis and is aware of what lies ahead for him? Does he honestly want to remain alive even though his last days may be ones of great distress or does he want to die with comfort and dignity? Another question to ask is “what makes life worth living for him”? The answers to all of these are deeply imbedded in a person’s emotional and spiritual being.
This is probably a time when other individuals should be involved in future discussions. Physicians, other family members, religious leaders, social workers and or therapists can help to relieve you of the total responsibility for bringing up the topic with your husband. Understandably you may be too emotionally involved to be the only one to talk with your husband. Do not delay in arranging these discussions.
Take every precaution to prevent lingering doubts as to whether you have made the right choice once the time comes. You certainly do not want to spend years feeling guilty about your final decision. End of life decisions are probably one of the most difficult choices a person is ever faced making during their lifetime. There are no easy answers and this is going to be a process for all involved.
If you have a question or comment direct them to firstname.lastname@example.org or Elder Services of the Merrimack Valley, Inc. 360 Merrimack Street B#5, Lawrence, MA 01843.