Q&A: ‘Hoping for the best, planning for the rest’: Shireen Heidari talks palliative care amid the pandemic

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The Daily sat down with Shireen Heidari, a palliative care and family medicine physician at Stanford who wrote the essay “Touch, and the absence of it” for The Lancet, sharing her experience caring for patients with serious illnesses amid the pandemic. She is the rotation director for students, residents and fellows who want to spend time on the palliative care consult service, and teaches palliative care skills across specialties.

The Stanford Daily (TSD): How would you describe palliative care? Who is it for and who provides this type of care?

Shireen Heidari (SH): Palliative care is a medical specialty that focuses on supporting people diagnosed with a serious or life-limiting illness, at any age and at any stage. Some examples would be people who have been diagnosed with cancer, heart failure, chronic lung disease, strokes, dementia.

This type of care is provided by a specialized team that includes nurses, doctors, social workers, spiritual care providers, who work alongside primary medical teams to provide essential support. It can be provided in the clinic, in the hospital and sometimes at home or via telehealth. We support both the patients and their loved ones. We suggest medications, come up with strategies for managing pain and symptoms and reach out to the family members or children for legacy work.

TSD: When did you first decide to be a palliative care physician? Any backstory behind the decision?

SH: My first exposure to palliative care was in medical school, but I didn’t know I wanted to pursue it as a specialty until I was in residency. You could probably say that several of my teachers realized it before I did. I wanted to be a primary care doctor. As I got further along in my residency training, I became the one delivering a diagnosis of cancer or discussing what to do next with families. I was well-supported by my teachers (including some who were in palliative care), and I realized I wanted more training in how to manage complicated symptoms and how to be present with people facing something unimaginable.

TSD: How did your family first react to that decision?

SH: When I first decided I was going to pursue additional training in palliative care, my family asked me if I was sure, wondering if it would be too hard, or too sad. I think we all worry that talking about hard things, such as dying or cancer, will make the situation worse. While it might be true at times, we’ve also encountered some who want to know if their loved ones will be okay when they’re gone. And so, what we do is to provide space for such conversation to happen.

TSD: As a palliative care provider, what aspect of your patients’ well-being do you focus on?

SH: Some of the elements we focus on are the things that bring that person meaning and joy, what they’re hoping to get from their medical treatments, managing symptoms that may come up during those treatments, living well at any stage and maximizing quality of life. While being present with people facing the end of their lives is a part of what we do, it’s not the only part. A common phrase I hear palliative clinicians say is, “hoping for the best, planning for the rest.” A palliative care team can support people and those close to them while they are trying to navigate both the day-to-day and planning for the future. We try to focus on making each day as good as possible.

TSD: You recently wrote an essay about your experience working as a palliative care physician amid COVID-19. How has the pandemic changed your work routine?

SH: The pandemic has made building connections harder both inside and outside the medical setting. For everyone, masks are disorienting and make it harder to know who everyone is. Even knowing that the rules are in place for safety doesn’t make them easier to follow. For our patients, not having families at their bedsides is heartbreaking, especially in crisis moments. For our team, it has affected our ability to meet safely in the same space or do group visits. Some of us had to call in instead of meet in the same room during team debriefing. We try to support each other during crisis moments, but not doing it in-person is more challenging.

TSD: You wrote, “One consequence of minimising physical contact for safety is that some patients’ only touch points might be a set of physical exams, a lab draw, some vital signs,” and “when physical touch from loved ones is limited or not present at all, medical staff across the country are trying to provide it through layers of personal protective equipment.” What difference does a touch or physical connection make to these patients?

SH: Often palliative care teams are meeting people at a very vulnerable time — maybe they’ve received a new diagnosis, maybe their cancer treatments have been really hard on their body, maybe they’re at a crisis point. Being able to respect that vulnerability and hold space for uncertainty and emotion are big pieces of building connection at times of crisis. Sometimes holding someone’s hand while they walk through hard things is part of that.

TSD: Why did you decide to write the essay?

SH: I was a literature major in college in addition to being pre-med, so I’ve always been drawn to storytelling. Medicine is very much rooted in stories — how the narrative of the person who becomes a patient is interpreted and placed in a medical context, and how that context affects that person’s identity. For me, I write to process what I see and to remember the people I care for. Most of it stays private. This past year has been hard, and I wanted to try to put to words some of what I was feeling. That it has resonated with people is more than I expected when I wrote it.

TSD: What do you wish people know about palliative care?

We are not scary people — our goal is to meet someone where they are at, offering support. Some patients see me during a crisis moment, such as after the diagnosis of a serious illness. Often our first few visits are spent getting to know you and what’s important to you. Unless there’s a crisis happening right that moment, we don’t have to talk about the end of life.

We are not just dealing with the symptoms or treatments but how those treatments are affecting every element of their wellbeing. Even if your treatment is working, it affects the way you see yourself and how you perform your roles as a parent, worker, sibling. We are here to help people reclaim the things that make them who they are. It is more proactive than reactive.

TSD: What are the common misconceptions about palliative care?

People often ask if we’re the same as hospice. To equate all palliative care with dying isn’t accurate. Hospice is designed to support people who either have reached the point where the treatment is doing more harm than good or when someone thinks that the treatment is not what they want anymore. Hospice is really an insurance benefit, a philosophy limited to the end of life. It is an important piece but not a representative of the whole.

Palliative care is not limited to the end of life. We walk along someone from the time of diagnosis, throughout their treatment, and so on. If you or someone you love could benefit from support that emphasizes your physical, mental, emotional or spiritual well-being, it doesn’t hurt to ask for a palliative care referral. The transition to hospice is when the things that we are trying to do are not working anymore. Part of the confusion is that the field started off as just hospice but has now expanded broader because we realize that the need for support extends far beyond the end of life.

TSD: What continues to motivate you at work?

SH: The hope of making a small difference, one visit at a time. This was true when I worked in primary care, and it’s true now. I won’t be able to cure cancer or perform major surgery, but I can relieve pain and nausea. I can hold space for emotion. I can support people in crisis. I can try to make a terrible situation a little less bad. It may not seem like much, but it can matter a lot.

The transcript has been condensed and lightly edited for clarity.

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Kristel Tjandra is a biomedical scientist who is passionate about science communication and journalism. Contact her at thegrind 'at' stanforddaily.com.