I walk in the room, and she turns to look at me. A big smile crosses her face. From the report we had been given by her care team, I’m not sure she’ll know who I am, so I ask, “Do you know who I am?” She laughs and says “You’re my big sister.” I smile and give her a big hug, fighting back the tears. Eight years my junior, I was a little mama to her—usually at the request of our mom, but I came to love that role. In fact, we each had our first child within months of each other. Somewhere there is a photo of us facing one another with our very pregnant bellies touching. That was so long ago.
Four weeks ago, we learned she has an advanced aggressive cancer with metastases to the brain and lymph nodes. Most likely it is other places too, but at some point, you just stop looking. At that time, we were told she had about 3 weeks to live. My guess is when you read this she will be gone—I hope not. To say the news was a gut punch is putting it mildly. One of the most difficult things we had to deal with was what happens now in the final stages of her life and what happens when the end comes. Like many of you, we had never had the conversation—“What do you want for your end-of-life care?”
My sister has been put on hospice and is designated as DNR/DNI (do not resuscitate/do not intubate). That part of the decision of her care was almost made for us given the advanced stage and aggressiveness of her cancer. There is no cure, and keeping her comfortable is the primary focus. Her care team is phenomenal and has been helpful as we grapple with the decisions we need to make. Being the oldest and the nurse, my family turns to me—even my sister’s adult daughter.
As of this writing, my sister says she is not in pain. She enjoys visiting with us and especially enjoys her grandchildren. We give her whatever she wants. Pepsi is a frequent request. But we know all of this will change. Her care team prepares us for what to expect—pain, possibly seizures, in and out of consciousness as the cancer progresses, and her need for pain meds increasing. She will likely stop eating and drinking. Other than Pepsi, she has already decreased her intake. I’ve been here before—with patients, friends, my dad. It’s a hard time.
We need to talk about end-of-life care long before the end is near. We need to talk about what is meant by every aspect of care that might be needed when things happen and, with the expertise of care providers, knowledge of what those aspects of care will accomplish. Curative or palliative? Or something in between. When someone has other conditions, the question becomes what to do about those. My sister has lived with schizophrenia for most of her adult life. Managed with medications, she has been stable. But now with the cancer, the need to maintain her stability is even more important. What she is going through is difficult enough. Not continuing to manage her mental illness would only serve to worsen her ability to deal with what lays before her.
Diabetes is another condition that needs consideration for end-of-life care. According to the American Diabetes Association, diabetes was listed as a cause of death in nearly 400 000 death certificates in 2021. However, that does not count the unknown number of people with diabetes who die from other causes not related to diabetes, such as cancer. When considering end-of-life care for someone with diabetes, the treatment goals need to be reevaluated. The Palliative Care Network of Wisconsin Diabetes Management at the End-of-Life is a good resource. While we are accustomed to helping our patients manage their glucose levels as close to normal as possible and as makes sense for an individual with the prevention of long-term and acute complications as the goal, at end-of-life, the need for tight management of glucose and prevention of long-term complications is no longer the focus. Instead, the focus shifts to keeping the individual comfortable and preventing extreme hypo- and hyperglycemia. To do that, diabetes medications will likely be adjusted as conditions change. Frequency of checking glucoses may lessen, and target ranges will relax. In the final days, the individual may go in and out of consciousness, refusing food and even water. During this time, all diabetes medications may be stopped for those with type 2 diabetes. To prevent the added burden of DKA for those with type 1 diabetes, insulin may be continued but adjusted accordingly. The Palliative Care Network of Wisconsin suggests we “be careful to frame our discussions therapeutically, clarifying that stopping or adjusting medications is being done to prevent harm and promote patient well-being.”
We will all die someday, and unless we have this conversation with our loved ones, they will be left with making the decisions for us, and I speak from experience when I say sometimes, not everyone agrees. According to Medicare.gov, an advanced directive (AD) includes a designated health care proxy or power of attorney and a living will, which outlines desires about health care treatment when an individual is unable to make those decisions. The conversation should ideally take place when we can still speak for ourselves and share our desires with our loved ones. Yet it’s known that only about 1 in 3 people have completed an AD. I’m guessing part of the reason two-thirds of us have not done this is about denial. Even at 90, it is hard for my mom to say, “At this point, stop and let me go.” It feels so final . . . because it is.
But even health care providers can be uncomfortable about the conversation. There are resources to help: The NIH has an Advance Care Planning Guide, as does AAFP. There’s The Conversation Project and Begin the Conversation, all of which can be found online. As a DCES, you may find yourself being pulled in when someone with diabetes is facing a terminal condition. Having the conversation with the patient and the family earlier in the process rather than later will help them focus on supporting their loved one.
Palliative care is a beautiful thing when everyone can accept the inevitable and focus instead on the joy of the life you have had with this person. My sister has this wonderful way of taking everything in stride. She says she is not worried. Perhaps her schizophrenia is a gift in that way. I still want to take care of her like the 8-year-old who was given the gift of caring for the new baby in the family. During my most recent visit with her, we were silly. We looked at photos, and we talked about old times. I took some selfies of us, and we giggled. The look on her face is priceless. I know these visits are limited, but I cherish every one of them. I ask her hospice nurse how my sister is doing, and her answer has been “no change.” I know one day her answer will be different. I’m not sure I’m prepared for that day. I don’t know my life without my sister. But I will know we did everything we could to make this time comfortable for her. And this time has allowed us to let her know she is not alone in this journey.
We owe it to our patients and ourselves and our families to have the hard conversation now so that when the time comes, we can all focus on a peaceful and joyful ending to a most wonderful life.