by Pat Taylor, CKN Caregiving Section Editor
I first met Dr. Scott Borinstein, a young, dynamic and engaging oncologist, at Critical Mass (the Young Adult Cancer Alliance’s annual conference) in Denver last November. During a conversation between dart games, I began to share with him the loss of my daughter, Sara, to a sarcoma (his specialty). As we talked, I realized that I had a lot of questions about the relationship of the oncologist with his/her patients and their caregivers. Scott was open, authentic and keen to chat. It was clear to me that other caregivers could benefit from his answers. So I set up a phone interview with him, to have a more in-depth conversation that could be publicly posted on CKN. He graciously agreed.
Scott, what is the typical patient-caregiver relationship in your practice?
Due to the type of cancers I treat (sarcomas), my patients tend to be children, teens (13 to 17) and young adults (18 to 25). Their caregivers are usually their parents; occasionally it will be a spouse/partner, sometimes a friend.
What can the patient and caregiver expect from the first meeting with you?
The first meeting is about setting ground rules and boundaries. The conversation may vary depending on whether or not this is a first diagnosis, a recurrence, a referral from another oncologist, and/or what stage their cancer has reached.
1) I tell the patient (no matter their age) that I am their doctor, not their caregiver’s doctor…and that “I need to do whatever you need me to do to make you feel comfortable with this situation.” Obviously, with teens and younger patients, the parent/guardian has a legal right to make medical decisions for their child. This can influence the direction of this initial conversation.
2) I then ask the patient who they want to have with them during treatment discussions. Sometimes there are parents, relatives, siblings, partners/spouses, etc. in attendance. Anyone under the age of 18 needs to have a parent/guardian present. However, many patients in the 18-25 age range will agree to have a parent present even if they also have a spouse/partner with them. However, as a young adult, the patient has the final say even if their decision conflicts with their parents’ wishes.
Occasionally a parent of an 18-25-year-old finds it difficult to accept that their “child” is legally permitted to make decisions about their care and treatment. By encouraging a feeling of team support for both the medical and psychosocial needs of the loved one, we can find a way of bridging the gap between different communication styles and overall expectations. If everyone can be on the same page, the patient is better off. It makes their journey – and my job – easier.
3) At the first meeting I would discuss the diagnosis, a course of action, treatment plan (surgery, chemo, radiation etc.), and the short term and long term consequences for the patient’s life. Depending on how new the diagnosis information is to the patient, I may need to arrange for follow-up meetings, which could include a surgeon, radiologist, psychosocial support, and a pain management team, so questions can be answered directly by those involved with the treatment protocol.
Should caregivers expect to be privy to medical information and treatment options?
I support the concept of having a caregiver in the room because the patient can be overwhelmed by the amount of information that can accumulate during the process of treatment. A caregiver can keep records and provide information or clarification to the patient when they are ready to hear it.
You mentioned to me that creating a feeling of trust between you and the patient and caregiver is important. How do you do this?
Creating TRUST between me and my patient is the primary goal. So, if my patient or their caregiver wishes to explore a second opinion or treatment protocol, I encourage it. I am never insulted or offended. Being diagnosed with cancer makes the patient and caregiver feel extremely vulnerable. If I were in their shoes, I too would want to know that I had explored all the options possible to treat my child/teen/young adult. So I may suggest the name of a colleague at another cancer centre who specializes in their specific cancer. Often I offer to send the tumor to another pathologist for additional review. I try to always discuss clinical trials options for which the patient may be eligible, at our centre or other institutions. I tell them my job is to work with my colleagues to create the best treatment plan for them.
What happens if they chose to go elsewhere for treatment?
Sometimes a patient will keep me as their primary physician but take their treatment at another facility. I keep in close touch with their treatment team. My patient and his/her caregiver(s) can contact me for reassurances or questions at any time.
Sometimes a patient will proceed with a second or third opinion and then return to my care. That scenario can work out to be the best for all involved. It creates trust and cooperation…a feeling of teamwork.
But yes, TRUST is huge. I must do what I need to do to ensure that my patient and/or their caregiver feel able to put their trust in me.
Is it your job as an oncologist to give out the odds for survival for your patient’s particular type of cancer?
Some patients and caregivers are number people. They need to know the “odds” for survival. I, personally, am not a number kind of guy. I work with rare cancers (as opposed to common cancers), which means that the “odds” for survival are already skewed. But again, I want to create TRUST, so I share the percentages when asked. Often I have to have challenging conversations about patients with a terminal diagnosis. Patients and their caregivers want to know “how long do I have left?” This too is a very difficult question to answer, and I tell them I am nearly always incorrect. I will often answer this question in relative terms: days to weeks, weeks to months, months to years. And then we create a treatment plan that gives them their best chance for survival and/or quality of life.
Every individual is different so treatment outcome can vary. However, I have noticed that if I give them a number, like “a 20% chance of cure” they remember that number forever. They often proudly announce that they have outlived the odds told to them by their oncologist. I am delighted! I always encourage my patients to prove the odds wrong.
What are the 3 most frequently asked questions at the first meeting?
a) Is it treatable?
b) How is it treated?
c) What are the side-effects?
Is there a question that everyone wants to ask but is afraid to?
The question most want to ask but are afraid to do so: Will this kill me/my loved one? RESPECT and COMPASSION are key. First and foremost, I do not promise them anything I can’t deliver. If, at the first meeting, I already know that I cannot offer them a “cure”, I try to have them focus on a treatment protocol or direction to provide the best quality of life possible, right to end-of-life or hospice care.
I want to answer the question honestly, yet I find sometimes my answer is a bit vague so as to not take away their HOPE. During the first meeting I often witness the five stages of grief: Denial, Guilt, Anger and Bargaining, Depression and Acceptance. Sometimes the patient is ready to accept their imminent death before their parent or caregiver can. Young patients don’t want their parents to suffer when they die. Sometimes I find I have to gently push parents to understand that their child/young adult needs them to let them go.
When does the involvement of the oncologist end?
I stay in touch with my patient from beginning to the end. I am still their primary oncologist. However, by the time their case shifts to “end of life” care, I have already introduced them to their palliative care team (which manages their pain long before they are near death) and their hospice care physician and team. By this “end-of-life” phase my role often changes to one of supportive care
How would you like to be treated by your patient’s caregiver?
Three things are key:
1) Respect: not in an “awe-struck” way, but as a professional who wants to give their loved one the best care possible.
2) Trust: that I will answer their questions, provide the best care possible and that we can work together to offer the best support needed for all throughout the process.
3) Compassion: I try to arrange my schedule to make sure no one is waiting for me in the clinic for hours, but occasionally another patient’s urgent needs might make that difficult.
I have always been curious: Who “caregives” the oncologist?
It is up to us to care for ourselves; to make sure we find a healthy balance between work and private life. Patients and their caregivers have enough on their plates. I am lucky to have a wife and family who offer emotional support, and a garden that demands my physical presence.
Scott, thank you for taking the time to answer these questions!
Caregivers take heed: Don’t be afraid to ask questions, even the hard ones. Ask for a second opinion if needed. Clarify at the first meeting with your loved one’s oncologist what role you want to play during treatment. Lay the ground rules. Find ways to create trust, respect and compassion.
Dr. Borinstein is the director of the Pediatric Sarcoma and Adolescent and Young Adult (AYA) oncology program at Vanderbilt University Medical Center in Nashville, TN. His research and clinical interests are aligned to improve the treatment and outcomes of children, teenagers, and young adults with cancer. In addition to conducting translational research in Ewing Sarcoma, a malignant bone and soft tissue tumor, Dr. Borinstein is involved in the development and implementation of clinical trials for sarcoma and AYA cancer patients, with a goal of integrating new drugs and protocols into our current cancer therapies. Dr. Borinstein is also actively involved in developing ways to improve supportive care for AYA patients during and after being treated with cancer. When not in the hospital, Dr. Borinstein is busy at home with his two children, and enjoys cooking and working in the garden.