“The medical profession has to take ownership of the collateral damage that its treatments cause if we are ever going to reduce it.” -Susan Love, MD, Founder of the Dr. Susan Love Research Foundation
Patients love their doctors for saving their lives.
After treatment is over, it’s great to be able to offer rehab services for people who need the careful guidance of an exercise physiologist, physical, occupational, or speech therapist, lymphedema specialist, counselor, or social worker to address a multitude of physical and psychosocial issues that severely curtail the patient’s return to normal functioning.
What about those patients who need some guidance and support, maybe even some handholding, with mildly to moderately reduced functioning and quality of life, but don’t need or want clinically-oriented services.
Questions remain every day for the patient after treatment: how long will it take for me to feel better? What should I expect to be able to do? What can I expect from myself? How can I set attainable goals for recovery? How do I know if the cancer is coming back? What if comes back and nobody finds it in between follow-up screenings?
Office visits don’t allow time for the everyday, practical concerns, such as being fatigued and needing to prepare healthy meals that don’t take a lot of energy to make. Or figuring out what type or how much of a physical activity to do so they can enjoy it and reap the benefits without adding to fatigue? Or coping with relationship, social, or workplace disruption, trying to get a normal routine back after spending so much time going to appointments and focused on their own immediate needs from the demands of cancer treatment?
How We “Do” Survivorship
Medicalizing survivorship is not the best idea for all cancer survivors.
Let’s look at what patients are getting. When they return to their primary care provider after treatment, they return to the world of short appointments, overworked doctors, and a multitude of issues where they need some direction and support without the formality, time, and expense of a clinic visit.
The patients who do receive a survivorship care plan (SCP) might get just a several pages long document with their treatment summary, a schedule of follow-up screenings, and some symptoms they might experience, late effects, and signs of recurrence to report. They might receive a session or two with a provider who gives recommendations on lifestyle tips: healthy eating, exercising, managing stress, and avoiding exposures.
The problem is, many people who need these interventions need more than just a session. They need ongoing support and guidance to make behavioral changes or to incorporate risk-reducing practices into their lives, which have already been turned upside down with diagnosis and treatment.
Healthcare vs. Human?
In healthcare, and in cancer treatment, the oncologists do a great job, but the organizations for which they work are into efficiency, cost cutting, downstaffing, and running as lean a ship as possible. What the cancer survivor needs is time, support, attention, and guidance for recovery while returning to a changed, but normal routine. These needs counter the business profit model of corporate healthcare.
After leaving treatment, why should the person remain a patient, hostage to a clinical model of care with cost-cutting and business-oriented constraints? Each patient’s needs are related to the entirety of the person they are: a mix of their values, behaviors, lifestyle, and preferences. The person’s whole response to recovery: physically, emotionally, cognitively, socially is an individual experience. Why are we trying to use an algorithmic, cookie-cutter approach to cancer survivorship? Most of us don’t live our lives that way, and it doesn’t serve survivors well who are trying to re-integrate into living as a person, not a patient.
While we’re trying to figure it all out in our systems, there are 15 million or so cancer survivors in the U.S. alone, living in an aging, economically stressed, ever more chronically ill population, with increasingly expensive services, technologies, and treatments. They’re suffering from a cancer hangover, and we’re offering them aspirin, instead of helping them change their behavior.
While we’re trying to figure it out amongst ourselves, can we do some good for the patient?
Doctors are stressed. They are not trained in lifestyle or behavior change, nutrition, exercise, stress reduction, communication skills, or psychosocial interventions. They are subject to burnout and extreme stress and many don’t do a good job taking care of their own health.
Given the lack of skills, knowledge, time, and reimbursement for doctors in these interventions, when budgets are tight, organizations question the wisdom of building and operating a survivorship-oriented facility. Many cancer centers are marketing their rehab services to people who might be better off with community providers and recreation facilities, if the qualified experts are there.
Many people who finish cancer treatment would rather not return to the place where they were treated. The sights, smells, memories, and traumatic triggers are not what they want to experience when they are trying to restore their health and control over their lives, and recover from the cancer patient experience. And they don’t certainly don’t want to have to schedule more appointments! They’ve spent enough time in waiting rooms already.
Why not have physicians refer outside for those patients who want additional guidance, growth, coaching, support? What if there were programs offered in the community, that addressed many of the concerns and fears of cancer survivors, to guide them through recovery, help them build confidence in making risk-reducing changes in their lives?
Cancer Harbors™ is a program that offers just that. Starting with a plan to identify the individual’s needs in recovery (which change over time), and identifying the most urgent obstacles to their recovery so they can clear those out and make progress, Cancer Harbors presents skill-building activities coupled with videoconference-based opportunities for face-to-face interaction with a qualified coach for support and guidance. The year-long program addresses many of the common issues for cancer survivors in recovery, reducing risk and anxiety about recurrence, building confidence, independence, and insight through action and movement.
The low-cost program (approximately $20/month, under $250/year) is ideal for the survivor with basic computer literacy such as the ability to use email, click on a link, participate in basic social media platforms such as Facebook, or make an online purchase.
Cancer Harbors encourages clients to comply with their physician’s guidelines for follow-up care, and helps them navigate community-based services they might need. Cancer Harbors does not provide medical advice or nursing care, and does not sell products, supplements, diets or fads. Like a complement to a SCP, it picks up where the SCP leaves off.
Because living is so much more than surviving.
Contact Alene Nitzky, Founder/CEO of Cancer Harbors™, for more information. She welcomes inquiries from physicians and healthcare providers.