Accessing Supportive Care

Recently, I was asked to participate as a patient partner for a webinar through the Multinational Association of Supportive Care in Cancer (MASCC; https://mascc.org) on Precision Medicine for Hormone Receptor Positive Breast Cancer: New Therapies and Supportive Care Strategies. Dr. and Professor Maryam Lustburg and Dr. Aditya Bardia presented about medications and strategies and I provided the patient perspective. The recording from this discussion will be available to members on the MASCC website and I’d encourage everyone to consider becoming a member of MASCC. The recording can be accessed here: https://vimeo.com/993476581.

After the webinar, I got to thinking about the two scenarios that I shared as far as accessing supportive care. For anyone who isn’t familiar, supportive care encompasses many things and is all about those services or medications or programs that support a cancer patient. This could be about diet or exercise or mental health support and so much more. Palliative care is probably the first thing that most people think of when it comes to those physicians focused solely on supportive care but it truly is much broader than that. Overall, while it is getting better, historically many of us living with MBC (and likely in active treatment forever) have been excluded from supportive care programs and many patient led programs are filling that gap (check out Project Life as a prime example) — the bottom line for me as a patient is that no provider can possibly know all of the supportive care that individual patients need, but need to be focused on consistently and periodically offering what is available so that a patient can choose what they need.

Over the last seven (7) years of living with Stage IV Metastatic Breast Cancer (MBC), I’ve been seen by a variety of people in a variety of places. Getting access to supportive care and accessing those things that are needed to maintain a quality of life has not always been a smooth process. It is still baffling to me how so many providers don’t think of themselves as needing the input of other professionals and it’s daunting to realize how few times I’ve been referred without me having to advocate pretty hard for it or simply find it myself. Many times we simply don’t have the energy or brain power to find supportive care.

I’ll start with the positive example.

Years ago, when I was still on oral medication, I saw a physical medicine doctor in the supportive care office at the cancer center because I had fallen. As part of the appointment, I was given a list of the various services offered in the supportive care office while the doctor described what each service addressed. I’d been telling my medical oncologist for several years at that point about how my short term memory was affected after chemotherapy but because I didn’t seem impaired to her, she hadn’t referred me. Well, that physical medicine doctor did the referral and the neuropsychological testing I received demonstrated that I’d lost 20 IQ points from treatment. The cognitive deficits I’d been noticing (despite the fact that no one else did) were validated and I was able to get treatment, getting 15 of those IQ points back. You can read more about the specifics here and here.

The parts of the encounter that worked well were:

1. My doctor expressed options to me in writing and verbally. He asked questions and addressed each option as it related to me specifically.
2. No referrals were made without my buy in. No assumptions were made about what would help me or what I needed.
3. The referral was made with specific details as to why so that the provider I saw was oriented to my care and the specific needs that I had.

That example is truly the best one I’ve experienced when it comes to getting access to supportive care without having to do a substantial amount of research and work myself, while dealing with all the deficits and challenges that come with a cancer diagnosis and years of treatment. As I shared during the seminar, I don’t believe anyone is well served by simply having a list of options available and expecting patients to wade through all of the information and determine what they should access. Patients need help, we need someone to see us as whole people and to dialogue with us as to what our needs are and how those needs can be met.

As you probably anticipated, there is another example of how a referral for supportive care did not work well.

Somewhat more recently, at a different cancer center, I filled out a distress survey in preparation for an appointment with my medical oncologist in the midst of experiencing progression. If you are living with a serious or terminal illness you’ve probably had to do this too and the survey itself is a great tool for evaluating whether someone needs more help than is being provided. However, what is key about tools is how they are used. No one contacted me after I filled out this survey and my doctor didn’t say anything about it during the appointment — the idea of being distressed during a progression and treatment change is pretty much implied. A few weeks later, I got a call asking me why I missed an appointment. I then discovered that without talking to me, someone decided that based on my responses to the survey that I needed to see a social worker and they set an appointment without talking to me. I’m in and out of my patient portal all the time, but didn’t notice this unilateral activity and thus missed the appointment entirely.

The parts of the encounter that clearly didn’t work well were:

1. No one talked to me or asked about any services that I was already receiving (pretty important since I’m treated at multiple facilities).
2. No one told me that a referral had been made or asked me if that would be helpful.
3. No one told me that an appointment had been set without my knowledge and without ensuring that I was actually available for said appointment (yes, this is a gigantic pet peeve of mine).

In following up about this appointment that was set without my knowledge or request, I was able to speak with one of the social workers and determined that none of what they thought I needed would be helpful but something else was. While I understand that the automatic referral based on the survey perhaps ensured from a process perspective that patients were not missed; however, it is an example of how systems aren’t precise and don’t provide precision or personalized care to patients. In every arena, but especially in supportive care, no assumptions should be made about what a person needs. Questions need to be asked and patients need to be offered options, not have options imposed upon them.

Cancer care is pretty overwhelming. Patients have to live with the fact that we have cancer, some of us terminal, and all of the side effucks resulting from the care we need to stay alive. Supportive care is so important AND needs to be offered respectfully and carefully. No patient is the same as another and we deserve for our medical teams to see us a whole people.

Oh and I also strongly suggested that the term “easily tolerated” be removed from discussions with patients. Describing how someone is supposed to experience a treatment sets up expectations that many times cannot be met.