Advice for patients...
When you are PATIENTING be polite, but get angry if needed.
At book events for Healing I’m often asked what advice I have for patients to help them get the best care possible. I give an honest answer, which people seem to find lacking. The truth is, our health care system is in such a state of disarray that I’m not sure there is a way to always get great care. Also, there certainly is not a secret method for securing wonderful care, known only to nurses and doctors. If there were, I would have used it, would have sailed through my cancer treatment showered with compassion, and never would have written Healing.
As I’ve said many times, the real problem with American health care is that the patient is not the focus. Clinicians want patients to come first, but bureaucracy, paperwork, and of course questions of cost and profit, often take priority over patients. My tips, then, are informed by what I know about how the system works. The list below may be frustrating because it doesn’t offer a magic bullet, but nonetheless it is good advice. Patients will get better care when they remind clinicians why they got into this work: to help people. The ideas listed below can help secure care that feels healing, and is also competent, and, I hope, fair.
Follow the principles of PATIENTING to get the care you need.
To make these more memorable, I worked them into an acronym: PATIENTING (a play on “adulting,” a word I love).
1. Politeness whenever possible.
It’s true that you catch more flies with honey than vinegar. Save your vinegar for when the honey isn’t working (see #10 on this list). Also, you can be persistent, while still being polite and persistence is a good way to keep clinicians focused on you and your needs.
2. Ask for what you need.
After two months of trying a new post-cancer drug my oncologist said I needed to go back on Tamoxifen. I refused due to Tamoxifen’s side-effects and asked for a different approach. In the end, I switched oncologists because I was unhappy with how my first oncologist handled this situation (see #3 below).
3. Transfer to a different doctor if you want to (and if you can).
Physicians who consistently fail to answer questions, explain treatment options, and/or act impolitely and aggressively, are not doing their job. You can switch doctors. Your care is about you—not your doctor. When I worked as a hospital nurse we occasionally had patients refuse the Attending physician assigned to them after they experienced that physician as rude. Even in the hospital, patients have the right to expect respectful care.
4. Inquire if you have questions.
In home hospice I often saw patients who would not call their oncologist/cardiologist/PCP when they had questions for those physicians. Do not suffer in silence. Just don’t. Call if you need to and keep talking and listening until your question is answered.
5. Equal care is possible.
We’re learning more and more about the history of systemic racism, sexism, homophobia, and ableism in American health care. Be aware of and insist on equal care, which I know is not always available, alas.
6. Nurture yourself at appointments.
Wear noise-cancelling headphones in waiting rooms, have a support person at appointments, or give yourself free time afterwards, if needed, to recover from the appointment. Your peace of mind matters, even if most physicians’ offices seem indifferent to patients’ comfort and ease.
7. Talk about costs.
People’s insurance coverage can be great, so-so, or nonexistent. U.S. healthcare costs are the number one cause of personal bankruptcy. There is no shame in talking about the price of care, although be prepared for nurses and doctors not to know the cost of care any better than you do.
8. Insist on Answers.
Here’s a great statement to use: “I don’t understand.” Keep saying that until it’s not true anymore.
9. Negotiate bills.
Expert help can help reduce medical bills. This Consumer Reports article is a good guide to getting that help. Only in America…:
https://www.consumerreports.org/medical-billing/how-to-get-help-with-your-medical-bills/
10. Get mad.
There will be times when getting angry will seem like the only way to secure the care you need. Be clear, but not abusive, and save your anger for when nothing else has worked.
Our health care system pulls off miracles every day, but care often lacks compassion, and sometimes even basic humanity, as many of you know. I’ve gathered similar stories from people over the last couple of years as I have discussed Healing with readers. The stories people shared with me show the pervasiveness of a lack of caring in health care.
They include: The mother of a Lyft driver in Milwaukee received her cancer diagnosis from her doctor while sitting in his waiting room, surrounded by other patients and with absolutely no privacy. A patient had to wait over the weekend for the results of an important scan because the person who calls to tell patients their results explained, “I don’t work on Fridays.” Severe immune suppression is a risk for any patient receiving chemotherapy, and yet one patient who spoke to me was never notified when her blood counts showed she had zero neutrophils, the most abundant type of white blood cell and the immune system’s first line of defense against invading pathogens. A nurse I recently met said she was almost given expired chemotherapy at her first appointment for cancer treatment.
These are all examples of care-less health care and such thoughtless care, indifferent to patients’ humanity, is enraging. I wrote Healing because as a patient I was constantly surprised at how lacking in compassion my cancer care was. In my own work as a nurse I knew there were problems in the health care system, but I thought that the empathy and attention offered by me and my co-workers made up for the systems’ failings. As a patient I learned how painful those system failings are and for the first time understood that no amount of extra kindness can make up for them.
Patients with serious illnesses need tender loving care and following any of the tips I give in PATIENTING may not get you TLC, unfortunately, but they should help you get care you can live with without feeling hopeless or like you want to punch someone or both. Some of you may have helpful tips to add to the list I give here. If so, leave a comment and allow all of us to learn from your experiences.
I wish I had a key to unlock the secret to getting good health care in the U.S. Medicare for all, or some kind of universal care would really help, but we’re not moving in that direction as a country, meaning we’re all stuck with the dysfunctional fragmented profit-driven system we have right now. So, speak up, don’t take no for an answer, be polite, but get mad if you have to, and don’t be cared for by bullies if you have a choice. Also, the shame is that we don’t make affordable health care available for all our citizens, not that some of us can’t afford the care we need. The tips in PATIENTING may ultimately give patients back a sense of dignity and autonomy, which matter. Being a patient is hard. Support and care for yourselves as best you can no matter your health care issue.
And do add your own stories or tips here.
Book event for TAKING CARE
This past Saturday I did a book event with journalist and author Sarah di Gregorio, discussing her fab book, Taking Care: The Story of Nursing and its Power to Change Our World. You can see Sarah and me in the picture below, having fun by holding each other’s books. We wacky authors. What will we think up next?
Summer seems to be here and I am loving it!
Hugs to all,
Theresa
Great advice, Theresa, especially the part about starting polite, saying “I don’t understand” until you do, and transitioning to a mad but measured response if all else fails. I am deeply appreciative of my medical training and how it helps me as a patient; I hope to develop a course for folks in my community which would arm them with some of that information and make being a patient less stressful.
I was hospitalized for dehydration following my first chemo treatment for breast cancer in 2021; and while in the hospital was diagnosed with a severe case of thrush as well - which I proceeded to get after each treatment, making eating and drinking even more difficult. I begged my oncologist's staff (Onc was on maternity leave and being covered by various docs) to pre-treat me for thrush or even just call in a scrip so I could have it at the ready; but they would not. Each time I had to wait until it surfaced then beg for them to call in a prescription - despite sending them studies showing pre-treating chemo patients for thrush works. I will never forget the ONC nurse said to me, "I don't know what the problem is, none of our other patients get thrush." As though I was either being a whiner or was doing something to give myself thrush. UGH.