My mother died of cancer in 2011, when I was in my 30s. My father had died ten years earlier and most of our family lived far away. So even though I lived in Boston and my mom was in Denver, we had to figure out how I could help take care of her from a distance.
I began traveling the country frequently, laptop in hand, working as much as I could, and taking unpaid leave. From the beginning, every doctor we consulted recommended treatment. She accepted part of it (chemotherapy), refused another (surgery) and stopped another when it became intolerable (radiotherapy). As I saw changes in her that I knew did not indicate recovery – her introversion, her wasting body, her profound lack of energy – I struggled to understand why everyone kept going. to focus on a cure. I thought someone would talk to us about palliative care when the time came, but I was afraid to talk about what I was seeing and my feeling that his condition was getting worse.
My mother died alone at home while I was in Boston. I misinterpreted her ability to drive, shop, and take care of herself as a sign that the end was still relatively far away. It was only in retrospect, after speaking with her oncologist, that I understood that she had a high probability of having a fatal brain hemorrhage all along.
Why didn’t anyone tell us about this risk? Why didn’t anyone give us advice on how we could handle the situation differently? Why has no one ever mentioned palliative care or palliative care options?
It turns out our experience is not unusual. While 70 percent of Americans say they prefer to die at home, only about 30 percent of us are able to achieve that. The days of multigenerational households, when our mothers looked after our grandmothers in back bedrooms, have largely been replaced by family members separated by long distances. Caring for loved ones in old age has gone from a potential inconvenience to a complex, expensive and emotional endeavor. Patients, caregivers and families are too often caught in a bind.
At the time of my mother’s death, I had been researching health care inequities for almost fifteen years. As an academic sociologist, I have focused on illnesses such as coronary heart disease, diabetes and depression, trying to understand why some people are misdiagnosed or undertreated. After the experience with my mother, I turned my attention to end-of-life research.
Over the past decade, I have interviewed numerous patients, caregivers, family members, and health care providers, shadowed hospice workers, and completed death doula training, all this to understand why medical decisions at the end of life are so difficult.
Here are 3 lessons I learned along the way that I hope will help you too.
Lesson #1: Doctors don’t always know more than you.
Our culture teaches us to revere doctors, but that doesn’t mean you should underestimate your own expertise. After all, you have specialized knowledge that doctors lack, from knowing what’s normal for your body to what you eat, how you sleep, what your pain level is, and what you like. do on a daily basis. You are also the expert on changes in mood, cognition or emotions. I saw these kinds of changes in my mother, but I didn’t value my own expertise enough to raise questions with her doctors. As a result, I contributed to the delays in communicating his prognosis. Trust your intuition and share your observations with your doctors.
Lesson #2: Be proactive and ask questions about end-of-life care, even before you need it.
Many of us assume that our healthcare providers will tell us what we need to know, when we need it. Unfortunately, this is simply not true. Time away from hospitals and intense treatments can often provide families with the quality of life they desire. But there are many reasons why these options are not always discussed with patients and their families.
Our medical system tends to focus on curing illness, which makes it difficult to also think about the quality of care when someone is dying. It is also difficult for health care providers to have conversations about end-of-life care with patients, both emotionally and because clinicians are often trying to meet tight schedules that do not allow plenty of room for in-depth, thoughtful conversations. Perhaps more importantly, it can be difficult for doctors to know what patients think and what they prefer.
I thought we would eventually resort to hospice care, but I was afraid to ask about it because I didn’t want to appear pessimistic when everyone was so focused on a cure. In retrospect, I think my mother was also concerned about her quality of life, but no one wanted to talk to her about it either. This created another problem, which was that she and I didn’t know how to talk about our thoughts and preferences. The result was a lot of silence and delay, and she died without any of the support that I now know is available.
If you wait for someone to tell you that the end of life is approaching, it may be too late for you to act on your priorities. This is why it is important to be proactive and discuss it early, even if it seems too early and even if the chances of recovery are high.
Lesson #3: Learn about the types of end-of-life care available to you.
Many people are already familiar with hospice care, which has existed in the United States since the 1970s. Hospice care is covered by Medicare, but to access it, patients must forgo medical care intended to cure their illness. This compromise is often referred to as a “terrible choice” for understandable reasons.
But palliative care falls under a broader umbrella of palliative care, which is a newer part of our healthcare system. Palliative care consists of multidisciplinary teams focused on comfort care. Palliative care is not reserved for terminal illnesses, but can be used at any age and at any stage of the illness, even from diagnosis. Studies have shown that the use of palliative care reduces symptoms and improves the quality of life of patients and caregivers. It also reduces crisis care, such as emergency room visits, hospitalizations and time spent in intensive care.
Asking if you can speak to someone in hospice care will connect you with a team of providers who specialize in different issues, so they can help you identify your concerns and personalize your plans. Is it okay if you don’t know exactly what you need? Hospice workers can help if you need additional comfort care for symptoms like pain or nausea. They can help you if you’re stuck in the bureaucracy of our healthcare system and need advice on what resources are available and how to sign up. They can help you if you notice a new symptom or need help coordinating care with your doctor. Most importantly, hospice is a safe space where you can discuss difficult questions about prognosis, palliative care, and how to align your care with your priorities, even if your other doctors emphasize treatment and cure.
Beyond palliative care, there are many tools to help you think about your preferences and learn how to communicate with your loved ones and health care providers, all with the goal of getting the type of care you want. wish. For example, The Conversation Project, 5 Wishes, or A Beginner’s Guide to the End by Dr. BJ Miller and Shoshana Berger are all great resources.
I didn’t have this information because I was taking care of my mother. I saw changes in her, but I didn’t speak up because I thought I was supposed to accept everything the doctors said. I thought someone would tell us when she was going to die and when we should start hospice. I was wrong. Given what I know now, I would have made very different decisions – and I’m on a mission to help others achieve a different outcome.
Karen Lutfey Spencer, PhD is an academic sociologist who studies medical decision-making and doctor-patient relationships. She is currently working on a book about decision-making at the end of life. His research has been featured by media outlets including the New York Times, NBC News, and public radio in Colorado, Wisconsin, and California. You can follow her on Instagram and at www.karenlutfeyspencer.com.