Delivering Effective End-of-Life Care for Patients With Breast Cancer

Hyman Muss, MD, Lineberger Comprehensive Cancer Center at the University of North Carolina, Chapel Hill, NC, details his best practices for delivering effective end of life care for patients with breast cancer and their families.

Dr Muss expressed the importance of covering medical, legal, and personal considerations when delivering end-of-life care. He discusses palliative care and pain management, powers of attorney and matters of inheritance, and shares resources that can aid patients in the personal and spiritual matters of passing.

Transcript

I'm Hyman Muss. I'm professor of medicine at the University of North Carolina School of Medicine. I'm also the Mary Jones Hudson Distinguished Professor of Geriatric Oncology where I lead our geriatric oncology program for the Lineberger Comprehensive Cancer Center.

End-of-life care for patients with breast cancer can be complicated to define. We have patients that have been through numerous treatments for breast cancer, but who have very slowly growing cancers, a very slow tempo with a disease. These are people who even before modern treatments could live for years with breast cancer in their body. For those patients, it’s hard to be accurate on end-of-life assessments, especially because they have been through a lot of therapies. They have minimal symptoms, and they might have a moderate volume of disease, liver and bone metastases, but they don't grow very quickly. That is a group of patients that have been heavily treated but can hang on for a while.

Then there are the patients who are more obviously coming to the end of the line as far as our ability to help them with any definitive treatment. Those patients frequently have extensive liver or lung metastases, they may have only bone metastasis, which is not an uncommon problem, but they've been heavily treated. They have had multiple lesions, they've been debilitated, now they're in bed a lot, they've lost muscle mass, and they can't get around. In those patients, we frequently see patients who probably have weeks to months before their demise.

Then of course we all have the patients that we see that are extremely ill. Frequently they have liver function tests off the chart. They have dental status changes. They frequently have cognitive impairment from all the problems they're having. In those patients, we're talking about days to weeks until end of life. In each of those people there needs to be a strategy. I can tell you it's not a one-off, and it's not easy.

It's my fiftieth year of practice since I started oncology training. I still always rehearse myself a little, and I can't tell you the amount times that I've been surprised by what patients and families have told me. It’s always a family affair in end-of-life care. Hopefully the patient has a family they can rely on, or good friends. There’s not one easy way to approach this.

We can talk about using things like metronomic chemotherapy, which may be best for the patients for whom standard therapies have been exhausted, when the disease is progressing, but the patient wants something done. For those patients, it might be reasonable to try something. It's a very individual patient/clinician discussion. For those people who are really coming down to the end of life, there's always something that can be done.

Years ago, people would say, “Well, there's nothing more we can do to help you.” What they were really saying is, “We don't have any treatments that are likely to be of any value for your cancer,” but you can always help people like this. Just being involved, calling them occasionally, making sure they know you're still involved in their care with hospice, that you're doing something to help them.

I think part of the end-of-life care strategies is to work with patients and families to make sure that loose ends are cleared out. There's the practical stuff like wills, durable healthcare power of attorneys, who's going to get that favorite living room chair when I go? All those things are very practical. Frequently after someone goes, there are big family discussions and acrimony, get all that stuff out of the way. Do it. It's very hard to do. I've done it already, and I'm hopefully not close to end-of-life care. You never know.

I would take care of all those financial issues, like who’s going to be my durable healthcare power of attorney, which is very important. Some people don’t understand the difference between power of attorney, which is financial issues, and durable healthcare power of attorney, which is someone who can speak for you concerning your healthcare management, such as “she never wanted CPR” or “please don't put her on any life support apparatus.” You need someone who knows your views, and that you trust to do that for you.

I've had patients that will never accept they're going to die. As humans, we feel we're not going to die. I heard someone once say we're temporary immortals. We never accept it. All these things can't get it in our mind, but it's going to happen. With those patients, you should just do the best you can to make their passing as comfortable as possible. I think many patients do grasp that they're coming to the end. Many of us take care of these families for years and know them well, including the spouses, the kids, the in-laws, everybody involved, even their good friends. You want to make sure that their families and friends are aware of how sick they are, that you've gotten all the help you need, whether it's palliative care in the home, home healthcare, and of course hospice. It's sad that many people go on hospice just days before they die in the United States. A lot of patients could have used help that last month or 2 with someone coming in the house – all the medical, the spiritual, the practical help that hospices can give patients. Getting hospice going a little earlier is helpful, but of course you have to —for most hospices, though they vary greatly– be off-treatment.

Then I have things I tell patients about at The University of North Carolina specifically: we have an autopsy donorship program for breast cancer patients where they can will their body to our cancer center. We come and pick up the patient and bring them here for their autopsy and collect tumor tissue and normal tissue for research. At first, I was a little reluctant to tell people about this. This was devised by my wonderful colleague, Lisa Carey, MD, ScM, University of North Carolina]. The truth is that if you know your patients and bring this up, I'm surprised at how many will agree to do this. It's a final gift on their part to help other patients with breast cancer and other cancers, to learn more about the fundamental biology.

Then there are some lovely things on the Stanford Medicine Letter Project website. There's a template for a letter that one can write for all the memories about their family, things that they regret they didn't do, things that they're happy about, things that they want to tell people about their lives. I think it's wonderful. I haven't done it. I tried doing it once years ago for my own family, but I wonder today with all the cameras on our phones and everything, whether maybe making a little vignette of the family, it doesn't have to be in context of someone's dying breaths, but at some point when the end is coming to make a little digital record of the family, that might really be nice later on as opposed to just photographs or memories. I think we're in a time where that's easy to do, and I think it might mean so much in generations to come for people to know a little bit about that patient or yourself in that context.

End-of-life care is hard. Obviously, you need to make sure that patients aren't suffering in pain. One of the things I tell people is that as long as I'm your doctor, I'm going to do everything humanly possible, and it's highly unlikely you're going to have a painful passing. I think we can do that. There are rare exceptions, but even then, there are things can be done for people that you've tried your best and been unable to help their pain. I think pain is a great fear. Short of that, what happens to many patients is between their cancer and their drugs, they slowly slide away. They become less conversant, sleep more, and then they go through the stages of dying.

Most of the patients I think have minimal awareness at that stage. It's of course tragic for the family to sit through days of that, but as far as the patient is concerned and their suffering, I think it's probably minimal, although I'm not sure. I think there are a lot of things we can do to reassure patients and families that the patient's passing is going to be done with dignity, and that we will be around to help.