In this post, hear from Robert (Bob) Goodrich about how to be a good patient. Bob is a lawyer, husband, father, and leukemia survivor. You can read more from him at his blog AfterLife. Thank you to Bob for sharing his experience and guidance.
In the past seventeen months, I have been hospitalized ten times and have been an outpatient in an oncology clinic with between 50-100 visits. I’ve had among other things chemotherapy, radiation, photopheresis, a stem cell transplant, two eye surgeries, and total parenteral nutrition (intravenous nutrition). I have been treated or examined by oncologists, cardiologists, infectious disease specialists, ophthalmologists, gastroenterologists, radiologists, surgeons, neurologists and pulmonologists. It began with acute myeloid leukemia (AML), which led to a hemorrhage in my right eye, skin graft vs. host disease (a common side effect of a stem cell transplant), an intestinal meltdown that may or may not be gut graft vs. host disease (also a common side effect of a stem cell transplant), and most recently a blood clot in the leg that resulted in bilateral pulmonary embolisms and a stroke. None of the above is offered to brag or to elicit sympathy, but instead to indicate that I have had the opportunity to learn how to become a good patient. I offer the following advice.
What is a good patient? When I was diagnosed with leukemia and had to leave my law practice, my identity as a lawyer disappeared, and my identity as “patient” began. I embraced it, seeing it as a job with much at stake. Although being a “patient” patient is sometimes called for, that is usually only a minor part of the job. A good patient is not necessarily an acquiescent patient and sometimes should not be. Institutional medical care by its nature wants to categorize patients and standardize care, while at the same time asserting that every patient is different. Medical professionals can become insensitive to particular circumstances and make diagnoses and resulting treatment plans without a deep dive into the nature of the illness or particular circumstances. Initial misdiagnosis or mis-treatment can be irreversible, and they are not uncommon.
A good patient is a diligent student of his disease, is inquisitive about his proposed treatment plan, and tracks his medicines carefully. A good patient takes care of himself and of those in his new community. A good patient works toward the best outcome, plans a future assuming the best outcome, and comes to terms with the worst that may come.
How does one become a good patient?
(1) Become a student. Most people fare better with a sense of control. With no understanding of your illness, you won’t have that. There is typically a plethora of literature on an illness, ranging from the fairly straightforward explanations at sites like the The Leukemia & Lymphoma Society (LLS) to the reviews of clinical trials published by various researchers. Straightforward is not bad, and it is a good place to begin. Your comprehension level on the harder material may not be high, but you will usually glean useful information from it. Some of it may be scary. It is a good idea to stick with reputable sources, e.g., the Mayo Clinic, National Cancer Institute, MedLine, and The Leukemia & Lymphoma Society. I use a free app called “Pocket” to save articles that further my understanding.*
Ask your doctors to explain your illness in terms that you grasp. They are obliged to give you an explanation of the illness, how it has been historically and is now being treated, the success/failure of such treatments, and your prognosis based on what they know about you so far. There are no stupid questions. Ask them for articles to read. What is the purpose of each medicine? What is the purpose of each test? What do the test results mean?
At every stage of your journey you are entitled to know your diagnosis, your proposed treatment plan, and your prognosis. All of these things can change and in my case have changed more than once. Do not assume this information will be given to you without your asking or that even after asking it will be given to you. A diagnosis may be only a working hypothesis, but you should know it and accept that it may change.
(2) Decide What You Want. Of course you want to be cured as quickly as possible and return to normal. In many cases there will be a new normal. There may be various degrees of risks involved. For example, after I went into remission through chemotherapy, I faced the prospect of a stem cell transplant. Without the transplant, my risk of relapse was significant. With it, the relapse risk was reduced. The transplant, however, presented the possibility of serious consequences, including graft vs. host disease that could be debilitating and even fatal. I could forego the transplant and wait for relapse; if or when it occurred, I could try again to achieve remission and then undergo a transplant. But remission would be harder to achieve a second time. I might have two-three years of good quality life before a relapse, but relapse would be hanging over me. I decided that I wanted to take the risk of a transplant to create a greater opportunity for a cancer free future. These decisions often do not have to be made at the outset of the journey, but some reflection and self-assessment in advance will prepare you when the time comes. I am apparently suffering considerably from graft vs. host disease, and I wish I weren’t, but I knew the choice and have no regrets about the choice I made.
Your illness may be a pivot point for you. You may not be able to return to your job or your former avocations. Your energy level and ability may never be what it was. What is the best use of the rest of your life? It is a question everyone should ask occasionally, but you should do that now. You may then establish new goals and be motivated to pursue them, which is a counter to the despair that arises contemplating what you may have lost.
(3) Accept Help from Friends and Family. It is difficult to accept help from friends and family. You may be inundated with food. Take it. People want to visit. They need to give. Some will be engaging and lighten your load. Others may try to top your illness story with theirs or their aunt’s. Consider this: You may have been deprived of your ability to do for others, which may be an essential part of your life. You will find that some of your visitors need to talk to you more than you need to talk to them. You are no longer seen as a competitor or a threat to many of your friends, and I find that my friends open themselves up to me in ways that they have not before. I sometimes lifted their load, brightened their day. Try to give a concise, humorous answer to “how are you doing?” and then ask them what is going on with them. By so doing you are again a giver, a friend, and your illness becomes a door opener.
(4) Accept Help from and Establish Relationships with Medical Professionals. You are likely to find yourself in the hands of many medical professionals. Their degree of care for you may vary substantially. Treasure those who provide you with good care, but treat everyone with respect and courtesy. Ask them to tell you their stories. Remember their names. I play a lot of good music in my hospital room, and many of the nurses love it. It often begins a music conversation and then a general conversation. Initially, I did not expect to have ten hospital stays (and counting), and when I return to the oncology floor, I am often greeted by those who cared for me on previous visits. You are in a new community, and, like it or not, the quality of your care is affected by the extent to which these medical professionals in this community value you. They will talk about you among themselves. When due, compliment them or thank them. Ask them how their day is going.
You may find that doctors can be more difficult. If you are being a good student, you are sometimes pressing them, asking for more information, asking why, or what if? They may have become accustomed to giving pat answers that do not satisfy you, and they may become defensive when you press. I was once asked by one of my doctors, with a raised eyebrow, “How do you and Dr. X get along?” He had observed my pressing tendencies and knew Dr. X to be very assertive; he imagined some head knocking. To the contrary, Dr. X was originally taken aback by my questioning, but then began to start his discussions with “I know you will want to know more, so . . .” Dr. X and I created a good relationship. I am not always successful in this effort.
(5) Medicines. Treatment plans often involve the prescription of many medicines. The medicines and dosages can change frequently. Failure to adhere to the medicine treatment plan can be fatal. It is essential to develop a chart that includes the medicines, each day of the week, the times of day/night the medicines are to be taken and the dosages. You should have boxes on the chart to check after you have taken the medicines that you are to take at the appointed time.
It is not unusual for the medical professionals to make mistakes in this area, e.g., the instructions on the bottle are not the same as what you were told in clinic. During one of my hospital stays an anti-fungal I was taking for fungal pneumonia was found to have a life threatening potential impact on my heart, and the doctor quickly changed the prescription to another anti-fungal, but the change did not make its way to the nurse on duty, who that night brought me the dangerous anti-fungal. Fortunately, we were paying attention, and we advised the nurse, who made a rush call to the doctor, and I eventually received the new anti-fungal. I am sorry to report that based on my experience and conversations with others, these mistakes are not rare. My wonderful wife has become my self-appointed drug czar, and she keeps the drug chart and is alert for potential errors. To this end she spends much time on the phone with pharmacies and nurse practitioners.
Here you must be a student as well. What is the drug supposed to do and when? If it is not working, why are you still on it? Virtually every drug has a side effect, and your goal should be to take as few drugs as possible, understanding that with a serious illness you may have to be on a variety of drugs for an extended period. You should not, however, become complacent about the drug load and should keep asking about effectiveness and duration.
(6) Tests. MRI, CT, CRC, ECHO, ultrasound, bronchoscopy, X-ray. You will be subjected to numerous tests. You should understand their purpose. I have said “no” when I have concluded that a test is redundant or unnecessary. I recommend requesting a copy of the results. I was tested for a virus (at my insistence) and was told in an email that it was negative. I requested a copy. The test result was positive, and then was confirmed by a re-test, and that fact changed the course of my treatment.
It is wise to make sure that your insurance covers the test. The hospital asks you to sign a paper that says if insurance does not cover a test or treatment, you agree to pay for it. The hospital usually seeks insurance coverage confirmation before administering expensive tests, but you don’t want to get stuck with a large debt.
(7) Indulge Yourself. You may be going through a physical and/or mental beating. There should be at least one enjoyable event in every day. Get a massage. Do yoga if you can. Listen to great music. If you can, eat well, savor. Read or listen to humorous literature. Move as much as possible. Lying around is dangerous and depressing.
(8) Write. There are many reasons to write regularly. You will experience emotional peaks and valleys, and writing about them and then looking back reminds you how fleeting these peaks and valleys often are. Writing about them helps you keep your perspective. It does not have to be much, a sentence or two here and there. I find the best method is a running, password protected Word document with each entry dated. Sometimes you don’t know what you are thinking or feeling until you reduce your thoughts and feelings to words. As the entries accumulate, you will be amazed at what you have learned about yourself.
(9) Care for Your Caregiver. At least one person is having a more difficult time than you – your caregiver – be it spouse, parent, or child. Your caregiver is watching you suffer, handling complex medical issues, dealing with a myriad of medical professionals on your behalf, and worrying about his or her own future given your illness. Make sure your caregiver gets a break, plays tennis, goes out with friends, feels appreciated, and is reassured that you are doing everything you can to find your way back home.
(10) Accept Death. You will die, whether this illness kills you or not. In difficult situations, I always try to prepare for the worst case and then work for a better outcome. I have a will. I have prepared a memorial service. My affairs are in pretty good shape. I can focus on the present, on better outcomes, and on living.
I still have much to learn about being a patient, but I am ready to move on to other pursuits. I hope that you too graduate and move out of the land of illness.
Robert Goodrich (Bob), 61, is married to Sally Goodrich, and they have three children, Bobby (31), Grace (27), and Chris (25), and two grandchildren, Aria and Dylan. Bob practiced law for 33 years before being diagnosed with acute myeloid leukemia in December 2016. Bob posts a blog at aftrlife.org.
*The Leukemia & Lymphoma Society and PearlPoint Nutrition Services do not endorse any commercial products or services. Mention is for informational purposes only.