Here are the points that stick with me still:
1. Speak up. During one hospitalization, my wife complained of pain in her arm at the site of an intravenous catheter that had been placed for hydration. The nurse reassured us that all was fine, but her pain persisted and gradually worsened. We could have insisted that the IV be re-checked or removed, but not wanting to be perceived as “too demanding,” I decided to back down. The next day, she developed thrombophlebitis — painful inflammation of blood vessels — at the IV site. She was too sick to advocate for herself at the time. My choice to acquiesce contributed to her avoidable suffering.
These types of situations happen often in my experience: the man who is hospitalized with a heart attack but wants to discuss his foot pain, or the woman treated for pneumonia whose primary concern is her anxiety. Earlier in my career, I paid less attention to these issues when they didn’t seem related to my patients’ major medical problems, but I rarely make that mistake now. Even if I don’t immediately have an answer to my patient’s problem, I try and file the issue away and revisit it the next time I see the patient. As the physician and scholar Sir William Osler famously said, “Listen to your patient, he is telling you the diagnosis.”
2. Don’t be afraid to ask for a specialist. My wife was, at times, in excruciating pain. In fact, memories of her lying in misery while her doctors tried in vain to relieve her suffering are some of the saddest of my life. It was only the unconventional treatment choices of two specialists in distinct disciplines — one a neurologist, the other a pain specialist — that helped loosen the suffocating grip of her pain.
This experience reiterated how important it is to bring in specialists. And it reminded me how valuable pain management is. As an internist, most of my training in pain management happened on the job while caring for patients with cancer. Though I picked up strategies from more experienced nurse practitioners and physicians, I don’t have nearly the expertise of specialists, who receive formal training in a range of interventions and therapies. They also spend more time with patients suffering from chronic, painful conditions and learn through these interactions how to better aid their suffering.
The perspective of pain-management specialists is particularly important, because many physicians don’t treat pain seriously enough. In my experience, private conversations among doctors about patients with pain are often dominated by terms like “drug-seeking” and “addicts.” The stigma surrounding pain treatment is so powerful that doctors frequently bring these biases with them into meetings with patients, quickly turning a conversation’s tone from friendly to adversarial. This can leave patients feeling neglected, ignored or ashamed. Now, when I take care of patients for whom pain is a major component of their medical presentation, I am more diligent about explicitly addressing whether my pain management plan is likely to be effective. If I have doubts, I almost invariably consult a pain specialist.
3. Don’t feel bad about asking to speak with a patient advocate. Patient advocates — sometimes called patient representatives — listen and respond to patients concerns’ about their care, and often address concerns about quality or communication breakdowns. Discussing your concerns with them tends to focus the attention of doctors and hospital leaders in a way that might otherwise not be possible.
We used a patient advocate once during my wife’s care. A change in hospital leadership created an administrative roadblock that prevented one of her primary doctors from caring for her. We felt that the urgency of her needs were being cast aside, and I contacted a patient advocate and wrote a letter to the hospital’s president and executives. The issue was subsequently resolved.
I’ve also seen patient advocates work as a doctor. Recently, the family of a critically ill patient I cared for contacted a patient advocate because they were upset that more aggressive treatments had not been initiated by one of the specialists involved in her care — a concern I had picked up on in my conversations with them but had not fully appreciated. Managing her treatment alongside the specialists who were also involved was my top priority, but the advocate sharpened my attention, and I became more engaged in the specialist’s decision-making. Ultimately, she did receive more aggressive therapy, which speeded her recovery.
4. Share your health challenges with others and don’t stop searching for help. Of the many lessons I learned while my wife was sick, this might be the most important one. I searched endlessly for help from my physician colleagues, books, medical journals and websites, seeking ways to relieve my loved one’s suffering. Though many of these efforts led to dead ends, salvation finally came in the form of a senior neurologist in Texas who was kind enough to respond to an email I sent him. He had suggestions about how to manage her care and ideas about treatments to try, most of which we pursued. Additionally, he connected us to a preeminent neurologist in New York whose new, unconventional ideas finally began helping her and gave her relief.
As a doctor, it was undoubtedly easier for me to reach out to physician colleagues and make sense of the scientific literature than it will probably be for those not in the medical field. I encourage those without a medical background to speak with acquaintances who are doctors or nurses, or nonmedical friends who have experienced the health-care system firsthand as either a caregiver or patient. The Hippocratic Oath obliges us to help when we can, and you never know who may have had a similar experience or what another physician might be willing to do to help you.