We all have them: the needy patient who takes an extraordinary amount of your time and effort.
They show up late. They miss appointments. And when they finally do come, they seem to have little understanding of their disease, its treatments, and goals of therapy (although you’ve discussed this a thousand times before). And so you launch in, for the umpteenth time, how their cancer can be curable if they follow the plan, adhere to the pathway, participate in their own care, self advocate, or whichever is your language of choice to urge patients in doing their part. But they don’t seem to ever get it. Every visit, the same, but unlike Groundhog Day, no overall growth or self-actualization.
“Can you call my sister?” the patient asks, bewildered.
“Sure, I can.” And after the appointment you somehow manage to squeeze in a call to the sister, who incidentally lives two time zones away (surprise). She seems to understand the issues, but due to distance, defers all decision making to the patient’s son, who, after calling him (at 8:00 PM because he works), can find no earthly way to help care for his mother.
And you wonder, “Why can’t she be more like Betty?” Betty* is diagnosed with the same disease, the same stage, and the same treatment plan. But Betty has it together. Even though Betty is 84 years old, she and her daughter actively participate in treatment. They arrive promptly for appointments, usually early. Questions posed are dutifully jotted within a notebook, leaving room for my answers, which are penned in as the session proceeds. Prescriptions are filled promptly and treatment sessions completed. Betty will likely be cured.
The truth of the matter is, though, in study after study, cancer disproportionately affects the disenfranchised: the poor, the isolated, the needy. And even more tragic, this same group suffers from an increased disease burden, advanced stage of cancer, and lower cure rate. The deck is stacked against them. Add to this limited social support, inability to pay for medications, transportation, or copays, and a generally lower education level. The results easily describe the behaviors of our needy patients. That which we may often attribute to poor choices may be situational and unavoidable.
Better said, these patients are in need.
And we can often help. Identification and breakdown of barriers improves the entire health care delivery process and will likely improve compliance and overall patient outcomes. Plugging our patients in need into social support systems can begin the process of better understanding the patient’s psychosocial situation. If you have a patient navigator program, even better. National cancer support programs such as the American Cancer Society can help provide transportation. Other agencies such as the Leukemia and Lymphoma Society can provide individual patient mentoring by a survivor who has already completed therapy. Treatment of concurrent psychiatric conditions such as depression or anxiety disorders will not only improve the patient’s quality of life, but will also allow them more capacity to cope with the overwhelming demands of cancer protocols.
Cancer preys upon those least capable of managing it. They appear in our offices befuddled and lost, confused and out of control. Their ineffective management of the situation and repeated missteps result in being labeled a needy patient. And quite frankly, the whole situation drives most practitioners crazy. But please recognize that these patients truly need us. They need our care. They need our kindness. They need our direction. And they need our patience.
So the next time your eyes begin to roll after reexplaining the disease and treatment plan for the hundredth time to the same patient, look for help and ways to remove these barriers. Then take a deep breath and remember what a gift it is to be needed by someone.
*Name and details changed for privacy.
Comments
Peggy Zuckerman,
Dec, 22 2017 11:18 AM
As a long-term survivor of Stage IV kidney cancer, which had since turned me into a patient advocate, I must applaud the recognition of the value of the social support systems that other patients and advocates provide. The patient is usually the least prepared to handle the demands of the medical system--he's sick! Unless given that necessary support and education, the patient will remain overwhelmed and vulnerable to despair, helplessness and quackery.
In my case, I was misdiagnosed as having a scabbed over stomach ulcer which was to account for my severe anemia, and treated futilely for 8 months. At last, the doctor decided an alcoholic --no questions to me about the possibility--as my liver was failing, in need of a liver biopsy. A simple ultrasound showed a mass on my kidney. At that moment, the US tech turned away the screen, told me 'the doctor will talk to you", set up a CT where no one would talk to me. When the doctor did finally call me to say I had a mass, and that some other doctor would 'talk to me' about this, as soon as he figured how who. Thus silenced repeatedly and in shock, I did not even think to ask how large the mass was. I assumed it was a pea or peanut size, and only after getting myself to Mayo Clinic, was I told that it was a 10cm mass. Plus, the CT scan of the previous week had clearly shown that I had multiple lesions in my lungs, a fact not given me by the 'doctor'. From the zero of a scabbed over stomach ulcer to metastatic kidney cancer, all while being treated with iron pills and Protonix, and a large helping of silence.
What had I been taught in those early days? I had been taught to be silent, not to ask questions, not to expect complete information, and that I could no longer trust the doctor who had cared for me to be accurate in his diagnosis, nor in his willingness to give me proper care.
But Mayo sent me home with a binder full of information, including my medical records with simple charts to explain my care, a recommendation for treastment post-surgery, a precisely chosen local oncologist knowledgeable about kidney cancer, and a plan for treatment. That was 13 years ago, and that binder and my subsequent successful care taught me that I was lucky. And 'getting lucky' is not the best way to run a health system or to stay alive.
The luck of finding other patients and support groups helped me utilize the services, to make decisions with some confidence, and to learn to cope with the stunning diagnosis of a terminal disease. As a long-time member of the Society for Participatory Medicine www.participatorymedicine.org, I repeat the simple admonition, "Let patients help!" and expand it to "Let patients help each other!" .
There are credible patient resources, one of which, www.smartpatients.com, can be invaluable. We now have a dramatically improved atmosphere for the involvement of patients in their own diagnoses, in research, in education, and in shaping the medical system supportive of patient engagement. As the author knows, it can be overwhelming without a team, and the patient benefits from team-training, as do the medical personnel. Thanks for the honesty in the tone of this article, and for the recognition that patient participation is essential for improved outcomes.