A Lucky Life Interrupted: A Memoir of Hope by Tom Brokaw
NBC news anchor and journalist Tom Brokaw wrote a memoir about his experience with a diagnosis and subsequent treatment for a blood cancer called multiple myeloma, and facing his own physical limitations and mortality.
Written from a patient’s perspective, and despite Brokaw’s financial resources, social connections, exposure and fame, his experience is remarkably similar to the average person in terms of the shortcomings he discovers in the world of medicine trying to control this disease.
Before launching into further discussion of the book, I want to clarify my own perspective and interest in what Brokaw wrote. As an oncology nurse who no longer works in corporate health care, now working as a cancer health coach, I am writing this as a commentary more than as a review, to focus on many of the points Brokaw raises in the book based on his own observations and experiences in the cancer world. Based on my own observations as a nurse, I have chosen these points because I find them to be almost universal across the patients and clients with whom I’ve worked. These are the recurring themes I hear, regardless of the prestige of their treatment centers, doctors, and patient characteristics.
Semantics of Cancer
It seems like a good place to start, to remark on one little thing that got under my skin. Brokaw’s use of the term “cancer victims” is just a semantic preference, but I want to mention it, as it is remarkably relevant to the discussion. I felt this was an odd choice of words for Brokaw, perhaps just a consequence of his upbringing and generation, because many people were referred to as victims in the past when they were sick or affected by something out of their control.
I do feel that the healthcare system, especially when it comes to cancer, does indeed leave people feeling a bit like victims, not so much of the disease, but of the way the process is handled: the rush to make decisions, the crash course in medical lingo, and multiple diagnostic tests and invasive procedures they suddenly find themselves subject to, their inability to process all that’s come at them in a brief period of time, and the loss of control over the course of one’s immediate life plans. This does victimize people, it causes a degree of trauma, something they often don’t have time to process until later in the disease treatment process, and at that time they can find themselves with PTSD as a result of the medical system’s handling of them, sometimes more than the disease itself. The loss of control and powerlessness in the presence of fear is what leads them to victimhood.
Some of the things I wonder about as a health care professional are these: Why do we rush people into this complex treatment and take the total domination approach to their lives? Isn’t there some way to soften the blow, integrate the necessities of cancer treatment into a softer, more palatable approach, instead of the shock-and-awe, full-on offensive tackle that we take now?
The patient is going into completely uncharted and foreign territory, terrified, along with their loved ones, so why must we make it so traumatic? It’s hard enough finding out that you have life-threatening disease, or potentially so, but can’t we provide some comfort at the beginning?
The Need for Advocacy
As Brokaw observed, cancer took over his life soon enough as a full-time job, disrupting all of his and his wife’s normal routines and activities. Consideration of the patient’s lifestyle and life stage, and of family members makes difference, especially if it’s someone who is working as opposed to retired, as does the relative health of family members and their ability to participate in care.
The entire process is so loaded with details, that the patient needs someone to keep track of appointments and medication schedules, requiring listening, notetaking, and reminding. Brokaw’s daughter is a physician, but few people have a knowledgeable patient advocate or health care provider in the family. There’s a need for someone like that to help orchestrate the case, bring comfort and reassurance, translate medical jargon into plain language, ensure that important pieces of information are not left out, explain what to expect along the way in terms of how they will feel and what they will experience, how to know if it’s normal, and when to worry enough to call the doctor or go for emergency treatment.
Without this important advocate, the patient wonders who to believe, whether to try risky and untested alternatives, feels more like a science experiment, feels a loss of control of their body, health, and life.
One of the key interventions in Brokaw’s cancer experience was the introduction of palliative care early in the process. Multiple myeloma and it’s destruction of the bones can cause intense pain. Palliative care specialists managed his pain. Palliative care, historically, has been not part of the treatment plan until a person was facing end of life choices, however, the general public and old school physicians still need to be made aware of what palliative care IS: it is symptom relief, control of distressing symptoms that interfere with one’s comfort and quality of life. It is applicable to many situations where a person is not anywhere near the end of their life and might even have a very good prognosis. However, when they are suffering with pain, nausea, or other limiting symptoms that interfere with the ability to carry on normal activities, palliative care is warranted. The lack of awareness of what it can do, when it is appropriate, and where it is available is the problem; people don’t know to ask about it, and physicians gloss over it.
Physicians and Patients Communicating
The way the medical establishment thinks about patients is in desperate need of change. Great improvements in communication are needed, not only between different specialists involved in the patient’s case, but also in the physicians including the patient as the most important member of the treatment team. Communication has to include the patient while the physician-physician communication occurs.
Physicians need to listen to the patient, and look at the patient. Just as surely as they read published research results and numbers as evidence, they need to observe the patient in front of them. Brokaw was well aware of the difference in how he felt about his care between the physicians who treated him as part of the team and others who treated him as a “subject” of their interventions, passing him off from one practitioner to the next.
The whole point of medicine is to treat something that is going on with the patient. The physician does not treat a disease, he or she treats a patient, a human being. All health care providers must consider the effect of the disease and treatment on the person’s life instead of just thinking about the goal of cure or control of the disease itself.
Brokaw’s wife was aware that the medical approach to cancer consists of physicians painting the rosiest picture possible at the same time the patient is in the dark, completely unable to understand the full impact of what they’re about to undergo.
It’s my observation that physicians probably don’t have any idea what the patient is about to undergo, either, unless they’ve personally experienced cancer themselves, or they’d tell the patient a lot more. I also believe they’d reach out readily to practitioners outside of the immediate treatment realm to assist patients in normalizing their lives and return to function in more ways than just addressing the physical aspects of the disease.
The social and relationship changes in roles and routines, mental and emotional struggles, the lasting effects of medications on physical and cognitive functioning and the subsequent effects on the person’s independence…too few physicians even consider discussing this until after the patient is finished with treatment, if at all. While this is not in the physician’s scope of expertise, however they should assume responsibility for finding some way to inform patients of resources available and accessible to the patient.
When community resources are available patients should be informed, regardless of whether the provider of those resources is considered a competitor. It is a disservice to patients to withhold information based on greed or other factors behind legal or implied restrictions or covenants.
Economics of Health Care and Planning
Brokaw makes astute observations on the economics of health care…he mentions how much money executives in healthcare spend on marketing and consider it an investment, when it’s not. Marketing is an investment in the business of healthcare as a product, but not delivery of healthcare as a service. The service is patient care, but marketing in no way directly benefits the patient, so it’s really not an investment in patient care. Losing sight of the true end product is a problem when executives don’t understand the nature of the service they are providing, and instead treat the service as a product.
Another example of how physicians need to change their thinking is to remember that medicine itself, for all the precision and numbers, is still largely subject to individual patient variation, individual physician interpretation and practice. Recently, as we’ve tried to control costs, I’ve seen the desire of cost-conscious executives to fit things into neat, streamlined service algorithms lead to occasional disaster.
Some algorithms work better than others, such as those for cardiac life support or trauma scenarios. As a healthcare provider, I am concerned that the tendency to rely on the algorithm more than critical thinking can cause important things to be missed, particularly in cancer care, since individual situations for oncology patients can be quite variable. For example, the failure to note a patient’s chemotherapy-induced neutropenia might lead to delay in sepsis treatment or result in exposures for the patient.
As Brokaw reflects on the economics and politics of health care in the U.S., he sees the health disparities between rich and poor, and recognizes that we need a solution to help people take better care of themselves. He wonders at the Affordable Care Act (ACA)’s ability to facilitate this. The ACA does not help much with public understanding of healthcare and costs. What it does is make healthcare more of a consumer product, but it’s not something consumers understand or research such as they do with retail purchases.
Brokaw observes that cancer is not even on the horizon for most people, they just don’t have a plan for it, and it’s something that happens to someone else until it’s you or a close family member. He comments on the need to think ahead, planning for aging family members and how the need for that care will affect not only that family member’s quality of life, but also the planner’s, whether they choose to take on that role or assume it involuntarily.
There certainly is not enough planning within the family or accepting the reality of the needs of aging members ahead of time. When it comes to cancer, we also need a plan, just in case. Current statistics say that nearly half of us will have cancer at some point in our lives, so it’s foolish not to plan. When cancer strikes, there is an overwhelming array of decisions that need to be made, depending on the nature of the individual type of cancer.
Cancer has so many variations that the needs for one type of cancer can be completely different than another type, from the amount of weakness and fatigue, weakened immune status, privacy needs, or treatment side effects such as hair loss, but that does not mean one cannot have a plan. A safety net can be at least partially planned in advance, at work, in the home, designating who will do the cooking, care for dependents, do laundry, heavy lifting, errands, keep up with the bills, coordinate appointments, and track medications.
Another missing element is a plan for after-care. Survivorship care plans right now consist of more follow-up screening, procedures and tests than lifestyle or behavioral adjustments. While recurrence is a huge concern and anxiety trigger for anyone with cancer, the skills to incorporate healthier behaviors that address that anxiety are not presented in a way that the person can incorporate them into their lifestyle, especially a lifestyle that has been turned upside down and disrupted during the entire diagnosis and treatment process.
Finally, physicians don’t know what patients do everyday. They don’t take into account individual differences in patients, for example, telling a person not to overdo it with exercise means entirely different things to the sedentary patient versus the one who has been an athlete for 30 years prior to their diagnosis. These two patients might be at risk for developing lymphedema after the same exact breast cancer treatment, but telling the athlete not to overdo it might result in their doing 100 pushups the first day, necessitating a visit to a specialist in manual lymphatic drainage and loss of function for the assumed “healthier” patient.
Patients have to be their own advocates, but healthcare education that teaches them to do that is sorely missing from public education and post-secondary as well. We need healthcare education and planning as part of basic education. We must teach people how to manage their encounters with the healthcare system, because at some point, almost everyone will interact with it. We used to teach kids how to balance a checkbook in school, why not teach them about health care system?
While delivering a speech to a class of graduating physicians, Brokaw states, “Be disruptive. Challenge convention and change it positively”, referring to our approach to reforming healthcare. He goes on to say that their challenge is to “demystify the way medicine presents itself to the world”, even in the face of rapid changes in healthcare, not knowing where we will end up, and being caught up in the mess while it’s moving.
From my own perspective, my hope is that this new crop of physicians and all health care providers will see these shortcomings and indeed disrupt the status quo, and listen to those of us in healthcare who have been working on the sidelines, or in various forms of free agency without much attention from mainstream medicine or insurance companies, to carve a new path for healthier and less traumatic outcomes for patients of the future. In order to avoid another generation of cancer “victims”, this is what we need to do.
Alene Nitzky, Ph.D., RN, OCN is a health coach, cancer exercise trainer, and certified oncology nurse. She is the founder of Cancer Harbors™ and FIERCE™ cancer survivorship care skill-based education programs. Follow her on Twitter @CancerHarbors and @AleneGoneBad.