Monica has been in treatment for the last five years for a serious medical condition. She has moved from one treatment to the next, some more debilitating than others, some more successful than others. Monica has had periods of time when her condition was stable and treatment was discontinued. Temporarily. But over the last two years, the length of time between treatments has been shorter and shorter.
During the past six months, Monica has been involved in a clinical trial of a treatment that has greatly reduced her quality of life. It’s been hard on her to live in such discomfort and hard for her family to witness.
Dr. Adams, Monica’s physician, has been with her for every step of her treatment. She recently advocated for Monica to participate in this clinical trial, even though Monica barely qualified. Yesterday, Dr. Adams sat down with Monica and had the conversation that Monica has feared but also expected.
“We saw some minor improvement in your condition at the beginning of the trial, as you know,” Dr. Adams said. “At this point, we’re not seeing much benefit.”
“I understand,” Monica said. “I’m sure not feeling any benefit. This treatment is really throwing me for a loop.”
“Well,” Dr. Adams said, “We can continue the treatment to try to extend your life somewhat. Or we can discontinue it and give you medication to keep you comfortable. Beyond that, I am sorry to say that we have run out of options.”
“So the next step is up to me?” Monica asked.
“Yes,” Dr. Adams answered. “I will respect your decision and support you in any way I can.”
Considering a Hard Decision
That evening, Monica asked her family to give her time to be alone to do some thinking. In her heart of hearts, she knew that she didn’t want to continue treatment. She felt like it was greatly interfering with any quality of life she might have at this point. But she also knew that her family and friends would want her to continue fighting in the hope that the treatment would miraculously bring her back to health. Monica felt sad, not so much for herself as for her family, and how they had been suffering through her illness.
“What’s best for me and for my loved ones?” Monica asked herself.
The decision to stop treatment is a difficult one. If you, or a loved one, are ever in that position, here are some thoughts to help guide you.
Ultimately, it’s your decision. After all, it’s your life. While the desires of loved ones may be factors in your decision, you have the right to decide not only how you want to be treated but also whether or not you want to be treated. You’re in charge.
Weigh the options carefully. Often, this comes down to the potential benefits of the treatment, in terms of extending life, versus the effects of the treatment, including side effects. Ask your doctor to be clear about the potential of a treatment to extend your life, and what that might mean in terms of your quality of life during that time. If there are other treatment options available, ask the same questions. Reach out for support as needed, from people who can listen objectively.
Formulate a plan going forward. If you decide not to continue treatment, you will still need a plan in place. Get an understanding of what you may need in terms of care. This may include hospice care at home, or in a hospice facility, or in the hospital. Making these decisions in advance of when you actually need them assures that your wishes continue to be honored. Get connected with people who can explain the options.
Embrace your own sense of meaning. The end of life is a time to contemplate the greater meaning in life. Depending on your personal beliefs, you might take comfort in formal religious practices or your own spiritual path. But meaning might also come from connections with other people, spending time in contemplation, enjoying nature, listening to music, reading, or doing others things you enjoy.
Enlist your doctor to help you communicate your decision. Communicating a decision to end treatment can be especially hard on loved ones. Setting up a meeting with you, your loved ones, and your doctor, can be a big help in clarifying your decision. Your doctor can also help you to explain your plans for the days ahead, based on your doctor’s assessment of your prognosis. Your loved ones may initially resist your decision, and your doctor’s objective voice can help them to understand and accept.
Let yourself grieve. For yourself, and for your loved ones. When we experience loss, we grieve. You may feel the need to grieve for your own life, what you value and will no longer be a part of, as well as how your loved ones will suffer when you are no longer present in their lives. Let yourself have your feelings. Invite your family members and friends to grieve with you. Share your memories, your hopes, your dreams, your love. Give lots of hugs.
The decision to end treatment is a difficult one. Listen to your heart and to your mind. It’s your decision to make.