A doctor asks: What does a cancer coach do?

A doctor asks: What does a cancer coach do?
May 2, 2016 Alene Nitzky
Tear down silos, build bridges in healthcare

I recently was asked this question online, in so many words, by a physician curious about what a cancer coach does and what value could they bring to patients. Their question and my answer are included at the bottom in italics. The question was based on the physician’s own personal experience as a survivor. I appreciate the interest.

Three perspectives: Survivor, Cancer Coach, Physician

To explain to a physician what a cancer coach does and convey the value both to the physician and the recovering survivor, let’s start by looking at three different perspectives: the cancer survivor, the cancer coach, and the physician or oncologist involved in treatment.

Prospective clients carefully consider whether to hire a coach to help them with one or more issues with which they struggle as a result of their experience with cancer. It’s an extra expense, and there’s no guarantee that a broadly trained coach can provide solutions for the wide range of challenges that confront survivors after treatment. They don’t always understand what a cancer coach does.

Coaches often report frustration in simply being able to talk with a physician about why the coach’s services are valuable, because it is so hard to get any time with them. Coaches would love to have a conversation with physicians, to be welcomed as part of the team in helping patients recover, focusing on the patients’ needs, helping the physician achieve better outcomes for the patient, as well as helping the patient feel more satisfied with their quality of life in recovery.

But physicians don’t make time for visits, don’t respond to phone calls, e-mails or snail mail, and their front office staff carefully and effectively screen prospective vendors and visitors. The physician often sees the coach as an unnecessary extra service, that brings no value to the physician-patient relationship, “I’m busy, why should I want to talk to some coach, they’re not medical professionals. What’s in it for me? Why should I take time out of my busy day to find out what this person is doing? I gave the patient a cancer survivorship plan; I’ve done my job.”

Focus on the patient

Okay, doc. You’ve saved their life, gotten rid of the cancer with your treatment plan. But it also caused a lot of collateral damage, albeit unintentionally- and it’s still there. It sticks around, sometimes permanently. Patients need help picking up the pieces after a trip through the whirlwind of cancer.

Did you know that the simple act of giving a survivorship care plan can actually provoke anxiety because the patient is suddenly confronted with information about long-term effects of treatment? Nobody talked much about that during the treatment decisions or process, or they were too overwhelmed to remember. This assertion might not have extensive data to back it up, but I have extensive anecdotes from the clients I see every day.

You give them the plan. It includes a summary of their treatment, a schedule of follow-up screenings, some advice to eat right, exercise, manage stress, and a few other things. But you haven’t- and shouldn’t be expected to- helped your patient reintegrate themselves into a normal level of functioning and well-being. You haven’t spoken with the patient’s primary care provider about how this particular patient could have a more seamless transition from treatment to follow-up care. Where would you find time for that anyway, and it’s not reimbursed!

The individual characteristics of the patient determine what they will need after treatment. The likelihood of recurrence, any ongoing treatment needs, their health literacy and health media literacy, social, occupational, community, and family support networks, age, general health status or the presence of additional health problems, their personality, psychological health, activity level, socioeconomic status, education level, physical disabilities or functional difficulties, and much more.

Even if you, doc, are a cancer survivor, you have a much greater understanding of medical care, science and research, side effects of treatments and medications than most patients. You have a high level of health literacy, health media literacy, are educated, and probably live a fairly affluent or at least middle class lifestyle, with good health insurance.

You might be inclined to see your cancer as a matter of statistics, suck it up, and go forward. It’s not always that easy for the average person. There’s a lot that happens that they don’t understand or see from your medically-trained perspective.

But there’s also a lot you don’t see or understand because you aren’t listening, and that’s not entirely your fault, but it’s something that needs to be changed in the healthcare system. To be a fully engaged physician, you need to take an interest, understand why it’s important, and time to engage.

Engage and Communicate

Recently a friend of mine, an ER doc and breast cancer survivor, told me, “There needs to be support group for people who think they don’t need support.”

The problem is not that cancer coaches don’t have value, it’s that none of the stakeholders are communicating about how they can work together for the good of the patient. I hate using overused terms and clichés, but it’s the silo problem again. Professionals cannot operate in a vacuum.

I recently attended a large statewide public health meeting concerned with cancer care and there were no oncologists present. Does anyone else see something wrong with that?

Physicians need to be engaged in public health, in their communities, with people. They need to hear what people are saying and experiencing as a result of cancer care. Physicians talk about patient engagement for better outcomes. The public needs physician engagement for better outcomes too.

How can physicians engage? Leave your sanctuary, listen to people on social media, in the community, in public health agencies. Communicate with patients and advocates who can tell you firsthand what they’re experiencing in their everyday lives, not just when they see you for a follow-up visit.

Listen to the cancer coach, to understand what they bring to the team. What tools do they have that you don’t, that would make a difference in the quality of everyday life for your patient? What are the patient’s needs that they can’t articulate on a daily basis to you? What were they expecting after their cancer treatment? Is life meeting those expectations? Did you ever ask them?

So when a doctor looks at a cancer coach program and asks, what’s in it for me? I say, what’s in it for your patient that would show them you are engaged, informed, and genuinely invested in their well-being after they leave your life-saving care. You saved their life, now make it worth living.


Here’s the original question and answer that sparked this blogpost:

Q. I had cancer. I never saw a “health coach”. I am pleased with my results. What did I miss by not seeing a “health coach”?

A. I appreciate your interest and curiosity. What kind of cancer did you have? What kind of treatment did you have? How did it affect your everyday life after treatment? How soon were you able to return to full function? Did you experience lasting effects of treatment: neuropathy, cognitive dysfunction, fatigue, anxiety, social isolation, changes in priorities, financial, workplace, legal, or other difficulties? Weight gain/loss? Lack of energy for physical activity or other activities? Spiritual distress? Need for better communication of your needs to your doctors and health care providers in follow-up care? Need for better health media literacy so you don’t get tricked by scams that prey on people who don’t understand science or research? Need for guidance in setting attainable goals for recovery? Support in figuring out how you are ever going to return to specific hobbies or avocations that were disrupted or permanently made more challenging due to the after effects of cancer treatment? Need for help figuring out why your doctor says you need these medications for 5-10 years after treatment and they make you feel lousy- what you can try to alleviate the symptoms and what steps to take to make them more tolerable or communicate the need for trying an alternative brand with your doctor? How to exercise safely without triggering lymphedema? How to find support, make positive progress and take action without having to sit around in groups rehashing the same old laments? How to find the right professional with the right credentials to talk to about ongoing psychological distress because of relationship changes, loss of fertility, post-traumatic stress triggers, sexual dysfunction, and a host of other results from treatment. The list goes on. Perhaps you were lucky, or extremely psychologically, physically, and spiritually resilient. Maybe you have a higher level of education than many cancer survivors. Maybe you are more resourceful, or knowledgeable about these issues. Don’t assume that the average person doesn’t struggle with these things just because you didn’t. Try to put yourself in the shoes of the patient who doesn’t have the resources- emotional, financial, educational, and so on…that you do. Lots of need for cancer health coaches. Feel free to contact me if you have more questions.

 

3 Comments

  1. Jean 3 years ago

    I want to thank all the doctors and nurses who treated me for breast cancer. It was the best medical care I have ever received starting with the surgeon, a brilliant oncologist and the best radiologist. These folks were the major focus of my life for months on end. I went from what seemed like hundreds of appointments to two a year. I was released overnight from the intense care I received. My quandary was that I wanted to run as far away from the health system as possible, yet, I had lots of concerns and fears. I was not well. Yes, everyone was willing to take my phone calls and answer questions but the reality was we all needed to move on.

    What I didn’t anticipate was that after treatment I was a wreck. The chemo had sapped me of energy and during my follow-up survivorship meeting I was reminded that radiation may cause future damage. I no longer knew who I was or what my “normal” was. The treatment experience, and mine was one of the best, literally left me with PTSD. I needed to take baby steps to regain my mental, spiritual and physical health. The options are limited. There is plenty of misinformation on the internet and weird supplements reputed to stave off any future bouts of cancer. But where are the service providers who support you using research and accepted medical rehabilitation practices to address wellness? And that for me is what coaching is about. I want to deal with a knowledgeable professional who I respect as much as I had my doctors; one who understands and has the time to address my needs. That is why this coaching program, coaching in general, and FIERCE are so important. Recovery is hard work. You need help.

  2. Tim Yaotome 2 months ago

    I find it encouraging that the quality of healthcare can go up when there are people aside from doctors and nurses that can help the patient recover from a major illness such as cancer. Knowing that having a coach would make the physician aware of the patient’s condition completely, understand what is important, and give the proper care and treatment, it reminded me of my dad. He is currently diagnosed with diabetes and he is currently getting insulin treatment and going through a diet plan. I will get him a coach so that not only will he understand how the treatment will help him get better but also express his experience to doctors and other medical professionals in order to change the treatment to his benefit.

  3. Author
    Alene Nitzky 2 months ago

    Tim, you are right, a qualified and knowledgeable coach can make all the difference in implementing the best changes that truly fit the patient’s everyday life.

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