As a board-certified medical oncologist with certification in hospice medicine and palliative care and 32 years of experience dealing with some thorny issues, I offer to our readers the 10 commandments that each of us should expect when we shift from caregivers to care receivers.
In effect, we are all patients. It is just a matter of time before we are in a bed in a hospital or nursing home rather than standing around the bed providing care. So here it goes.
- Acknowledge me as a person. I am not simply a “diagnosis,” an ICD code, or a billing rubric. Find out something about me as a person. I am very funny. I have interests and hobbies. Get to know me.
- Provide me with a medical quarterback, a Marcus Welby to direct my care. Do not bombard me with seven subspecialists each of who use a tiny piece of my anatomy and each of whom has a catheter or a tube to put in some orifice.
- I understand that I will often be visited by teams of providers. If I am really sick, nauseated, or in pain, let’s minimize the size of the herd around the bedside. It takes energy to confront a team.
- Treat me as if you would a member of your family. We all know that tests are sometimes done unnecessarily and subspecialty consultations might not always be necessary. Target my management to get the most value from the test.
- Ask me about my major concerns. What worries me, what torments me may not even be on your radar screen. (One of our patients was a gentleman with far-advanced cancer of the pancreas, unresectable disease, and no one bothered to ask him what his greatest concern was. It was to get out of the hospital, to be with his daughter at her wedding the following month. Once we knew that, every effort was made for aggressive hydration and nutrition so he could make that important date.)
- Have some understanding of my insurance policy. What is covered, what is not, are there deductibles, are there copays? Why? (One of our head and neck cancer patients was advised to receive an off-label use of a relatively new agent. No one bothered to inquire that the patient did not have great insurance, and he was responsible for a $15,000 a month bill for a medication with a less than 10% chance of working.)
- If I have a serious illness and my expected survival is less than six months, do not wait to bring up the issue of hospice care. (This is a wonderful program, and what I consistently hear as a clinician from families, “Why didn’t we know about this sooner?”)
- Whom do I call, whom do I contact if I have a problem outside of the hospital? I will have seen umpteen clinicians, most of whose names I do not remember so what do I do if there is a problem at 2 o’clock in the morning?
- Please be certain that none of my medications have to be refilled within three days of leaving the hospital. No, I am not kidding. Give me enough medications to get me through acute episodes whether this is an antibiotic, an antiemetic, or a sleeping medication.
- Equally importantly, please be aware of the healing power of sleep. Most of us are sleep deprived under optimum circumstances and this becomes magnified under the rigors of our modern techno hospitals.