April 2023 Newsletter: Note from The President and CEO: Ready or Not – Starting a Conversation About Death
End-of-life decisions are varied and nuanced, and should be left to each of us to make for ourselves.
I recently read a thought-provoking op-ed in the New York Times by palliative care physician Dr. Sunita Puri. She reflected on society’s — and especially patients’ loved ones and healthcare providers’ — tendency to wait for a sign from the terminally ill person that they are “ready” to talk about death and accept that they are dying. Dr. Puri observes that,
“We [don’t] want to stumble through the thicket with [the dying person]; we want to meet them at the clearing … . We look for signs that the dying person is ready to have the conversation or accept they are dying, which results in us avoiding the challenging conversations that are necessary … . But death is never neat … . By sacrificing neatness, we can have a conversation about what the dying truly need from us. Understanding their authentic experiences helps us not only to see them more fully but also to prepare, together, for losing them.”
Dr. Puri’s article reinforces the importance of Compassion & Choices’ work to empower people to take charge of their own end-of-life care, well in advance of a terminal diagnosis. To drive social change, we need to learn from the success of the birthing movement and focus on empowering individuals. When women started to demand a family-centered birth, doctors and health systems responded: Women were no longer strapped down, fathers were included in the birthing process, and hospitals began to build and market birthing suites. The birthing process became patient-driven instead of provider-driven.
We can achieve these same changes around the way people die in the U.S. healthcare system if people realize their power as end-of-life healthcare consumers and demand change. Below are some ways you can positively impact your own end-of-life experience — and the experience of those who love and care for you:
Give your doctor “permission” to have honest conversations. As the New York Times piece makes clear, if your healthcare provider does not know how you truly feel and what you truly want at life’s end, they cannot advise you about how to weigh your quality of life against the quantity. Knowing each patient is unique, physicians are uncomfortable broaching the topic. However, research shows that a patient has the power to change this dynamic simply by asking meaningful questions. Here are three powerful questions that can equip your doctor to advise you in a way that empowers you and honors your personal priorities:
What is the likelihood that I will survive this treatment? Would it surprise you if I were to die within a year?
If I do survive, what do you expect my quality of life will be like during the treatment? After the treatment? Will I be able to … . [discuss whatever is most important to you]?
If this treatment doesn’t work, are there any more curative options? Are there options that would slow down the progression of the disease and result in a better quality of life?
Hearing the hard-truth answers to these questions might be difficult, but knowledge is power: Being fully informed gives you the clarity you need to make the right decisions for you. It puts you in control of your final days, not the disease or the treatment protocol. This decisional power shift can have a profoundly positive impact on how you live the final chapter of your life.
In many ways, the end-of-life care movement highlights the same challenges our society is facing in numerous other hotly debated areas. To date, we have been acting as if the only healthcare options at life’s end are binary — either “fight with all treatments”or “give up and die.” The reality is that, as with all choices in life, the options are more varied and the decisions far more nuanced than that. Sometimes the treatment itself results in more suffering and a lower quality of life. But we’re so habituated to giving up our power, we just step onto the moving walkway of standard treatment protocols without taking the time to ask hard questions and make our own informed decisions.
Provide clarity about your values and priorities to your loved ones. Other cultures have customs and traditions that help to normalize the inevitability of death. However, in the United States we have made death a taboo topic, and it is our fear of talking about it that makes conversations about dying so difficult. We think,”I have time, and it will be easier to talk about death when I am closer to it.” However, as the past three years have made painfully clear, none of us knows how soon we’ll have to face death, and the less you discuss it, the harder and more uncomfortable it gets to bring up the subject. The fact is, it is like exercising a muscle: We need to practice talking about death throughout life.
Regardless of how we die, our loved ones will grieve. However, when friends and chosen family know what their loved one wants and have the opportunity to say a meaningful goodbye, they are able to recover from the loss and continue their lives without the additional complications of unanswered questions, regrets or even guilt.
Be a source of support to those who are dying. In the spring 2023 issue of our magazine, I shared insights from longtime supporter Marcia Strean about communicating with people at the end of their lives. I encourage you to read that article if you have not already. If nothing else, remember Marcia’s top lesson: “Do please ask me what I want and need.” In addition, I offer the wisdom of another one of our amazing supporters, the late Allyne Hammer, who sent me this email in September of 2022, sharing her lessons as a terminally ill person and end-of-life care advocate:
Leave nothing unsaid or undone.
Fear is a liar and a waste of our imagination.
Life is fragile, so make it count.
Your priorities change when your life is threatened.
It’s different to die of a serious illness than to die from things that come with aging.
Alive till you’re dead.
A life well lived is long enough.
This is exactly what we mean by being “death positive.” It is not sugar-coating or denying what the dying person is going through, but neither is it expecting them to accept or deal with the approaching end of their life in a certain way. The most positive thing we can do for a person who is dying is to be fully and openly present: not judging, not expecting, just … accepting.