How to approach end-of-life discussions and tools to help
Preventive medicine is the wave of the future as doctors and patients focus more on maintaining good health. In conjunction with the trend, medical professionals should initiate discussions with patients and their loved ones regarding preferences for end-of-life care.
Part of my job as a palliative care social worker involves having such discussions. Unfortunately, some of these happen when patients and families are facing medical crises and have little time to consider their options.
Fewer than 10 percent of the patients I meet have an advance directive, a document that outlines how they’d want to be cared for if they were seriously ill. I believe we can do better. For example, more than 90 percent of people living in La Crosse, WI, have advance directives. The medical professionals in that community launched an extensive marketing campaign to educate residents on the role and value of advance directives, as well as how and where to obtain them.
Completing an advance directive is part of a process referred to as advance care planning. The process involves reflecting on what makes life meaningful to you, how you define quality of life, how and where you want to die, and who in your life can help carry out your wishes for end-of-life care. Having advance care planning discussions before sickness or serious injury occurs can help ensure you receive care on your terms. After my mother died in 2006, my partner and I talked about what we would want if one of us became sick or suffered a life-threatening injury. In doing so, we both discovered personal preferences that were important to us, and in some instances even surprising.
Advance care planning conversations can help relieve your family from the burden of wondering what you would have wanted. My palliative care colleagues and I work every day with families and loved ones who struggle to make end-of-life care decisions for patients, and understandably so. The emotional weight of having to make these decisions can be eased by sharing what you prefer and need in advance.
Let’s walk through when and how to have end-of-life discussions with your loved ones, and how these discussions can shape your future care.
3 steps to start an advance care planning discussion
There is no way to anticipate every scenario that might occur at the end of life. However, there are three steps we recommend to start the process of advance care planning: designate a health care power of attorney, fill out an advance directive, and have conversations with loved ones.
1. Designate a health care power of attorney
A health care power of attorney is someone with whom you feel comfortable discussing what is important to you regarding your end-of-life care. This individual doesn’t have to be a family member. It can be a friend or other trusted individual. The most important quality in a power of attorney is that they will carry out your wishes, even if they don’t agree with them or would make different decisions for themselves.
2. Fill out an advance directive
This document should include specific medical interventions and healthcare details that are important to you. Since there is no way to cover every possible circumstance in one document, you should approach the advance directive as a general guideline to your preferences for end-of-life care. That’s why conversations with your health care power of attorney are crucial.
There’s no need to contact a lawyer to get this form. You can get it from your local medical center, or even print one from the internet. My team often recommends Five Wishes Online, which is a great planning tool, but comes with a charge. Free advance directives available for download can be found at Caringinfo.org. Once completed, you should provide your doctors with a copy of your advance directive so it can be added to your medical record.
It’s possible that your doctor has never raised the topic of advance care planning with you. If this is the case, please let your doctor know that this is something you would like to discuss.
3. Have face-to-face conversations about your wishes.
If you are healthy, now is the time to start a conversation about what you may want should you experience a life-threatening illness or injury. You could reference a friend’s situation or a news story about someone who died as a framework. “I wonder how their family made decisions about their care. This is what I would want if I were in that position.”
If you or a loved one is already facing a serious medical issue, consider speaking with your medical team about specific treatments they may be recommending, as well as any side effects and risks. Speak with your health care power of attorney about your thoughts, concerns and questions regarding treatment risks, and what should happen if your condition becomes critical.
Tools to help you start an end-of-life discussion
If you find yourself unsure of how to begin sorting out your own wishes or broaching the topic with a loved one, there are tools available to help jumpstart those conversations.
Coda Alliance sells GoWish cards, which help guide you in considering aspects of care to consider at the end of life. For example: Would you want a specific medical procedure? Would you want a provider to talk to or touch you if you were unable to communicate? Who would you want at your bedside? The cards also prompt may wish to do if you are sick but can still communicate, including funeral arrangements, meeting with clergy, keeping someone with you at all times and so forth.
Having discussions about advance care planning helps loved ones know what’s important to you. Though it doesn’t make the dying process less painful for families, it can help alleviate concerns that loved ones may have regarding what you would decide for yourself. Advance care planning not only helps assure fidelity to your preferences, but can also provide your loved ones with some peace of mind that their decisions are consistent with your wishes.
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