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Talking with Your Doctor about Your End-of-Life Wishes

When we plan the least

When expectant parents are planning for their newborns, it’s commonplace to seek out trusted medical offices that are aligned with their needs and values. Similarly, it’s a common practice to seek out multiple doctors’ advice when we get injured, or receive a serious medical prognosis. We reach out to family members and friends for their input. Our goal is to feel like we’re in good hands – trusting our doctors with our well-being. This is an understood and common practice that is repeated throughout our lives. However, there is one time when this practice is too often abandoned.  

doctor consult

It’s the time when we approach the end of our lives.

Planning for the end of life is unique to any other human life experience. Raising the topic with family members or friends is not easy.  Talking with our doctors about our end of life is also difficult and not commonplace. Even when confronted with a terminal condition, the sensitivity around death causes many doctors to be reluctant about initiating such discussions and to instead rely on their patients to raise the topic.

So we need to raise the topic of our end-of-life wishes and start the discussions early. Like other times in life, it’s not only our prerogative to prioritize having healthcare providers who are aligned with our needs and values, but it’s also in our utmost interest to do so.  

There are many paths

You have a range of paths to consider when approaching the end of life. We describe several end-of-life options on our website. The available paths we discuss include stopping unwanted medical treatment, receiving care and treatment specific to the dying process (such as with hospice and palliative care), voluntarily stopping eating and drinking, and other options for those who qualify, including the California End of Life Option Act. Guidance for how to discuss these options with your doctor is included on our website here

Another great resource for how to talk about end-of-life options is provided by the organization called The Conversation Project (part of the Institute for Healthcare Improvement). They provide step-by-step guides for how to have end-of-life conversations. One of their guides is focused on talking with healthcare providers; you can find it here

The guide provides practical suggestions for raising the conversation with your doctor.  One suggested statement is: “I want to talk about my goals for care and living with my serious illness.”  Another suggestion shows how a conversation might begin along these lines: ”My nephew recently died in the hospital after weeks of aggressive care. That’s what he wanted, but I don’t want that. I think I might prefer to die at home. How can we make a plan for that when the time comes?”

Every one of us will have our own unique end-of-life experience. Initiating discussions to influence our dying process will lead to conversations resulting in greater clarity and enabling a death with a sense of peace. 

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Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.  

Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

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Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.