Patients and caregivers writing on KevinMD about the experience of illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, and what patients want physicians to understand. Physicians who have become patients write here too. For the record of what pain patients and physicians have said to each other about opioids and chronic pain since 2007, with patient authors cited at the same weight as physicians, see Opioids: what physicians and pain patients say, in their own words. For what patients, families, and physicians have said about dying, hospice, and the decisions families face at the end of life, see End of life: what physicians say, in their own words. For what women and the physicians who treat them have said about pregnancy, menopause, and the conditions dismissed for years, see Women's health: what physicians say, in their own words. For what physicians have said about consent, honesty, and who decides, see Medical ethics: what physicians say, in their own words.
Today’s healthcare consumers are increasingly asked to take a more participatory role in their care. For many this is a daunting task – even if the patient desires being in the driver’s seat. There are a myriad of issues undermining patient-physician communication – such as time constraints, lack of comfort with the subject matter, lack of shared language, or even fear – that can make the task of …
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Patients need to overcome the fear of asking questions
We’re a disgruntled bunch these days. We think there must be a better way to experience health care.
Doctors say they’re pressed for time, don’t make enough money, have to hassle with insurance companies and typically feel generally burned out about medicine.
Patients feel they wait too long in the waiting room, don’t get much time in the examining room to ask questions or share concerns, want to be more involved in …
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How can we improve the patient experience?
One of the hardest things after a cancer diagnosis is telling others: family, friends and colleagues. I preferred to a more open approach for a number of reasons.
Keeping everything inside was harder, talking and writing was a form of release. People close to you need to know to help them support you. Letting people know avoids awkward questions, providing an invitation for support. Previous experience with others who did not share …
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How to tell your friends and family that you have cancer
Have you ever sat on your bed after being discharged from a hospital stay and suddenly felt – along with the relief of being home – overwhelmed by what you have just been told that you and your loved ones must now do? Similarly, have you ever walked out of an appointment with your clinician and said, “HUH? Exactly what did we agree I am going to do about this …
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An OpenTable approach to hospital discharge planning
Earlier this year, I made an announcement that may have made a few people think I was half a bubble off level. I’m leaving CCU.
I’ve worked in CCU (and CVICU) for 14 years. 5 years ago I had a baby, and reduced my hours to one day per week.
It took me just about all of those 5 years to fully comprehend that one just can’t keep up with all there …
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Why this nurse left the intensive care unit to go into hospice
Planning a lengthy hospital stay is like planning any extended vacation or business trip, with the difference that transitioning to hospital life means transitioning to no longer being in control, where choice is limited, and where one is dependent on others.
Given my lengthy hospital stays as part of my stem cell transplants – some planned, some as a result of complications – the following may be helpful should you find …
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How to plan for a long hospital stay
Years ago, I attended college near the home of a favorite great aunt. Aunt Lucy lived alone in a tidy apartment with a tiny courtyard balcony, overlooking a busy Pasadena street. Sometimes, I would make the short, chaotic drive through the tangle of LA freeways in order to spend a few days visiting my aunt in her neatly arranged home.
I visited Aunt Lucy when I was in need of a …
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The healing art of listening: Life lessons learned from my great aunt
It’s easy for those with health problems to complain about what we don’t want to hear others say to us, but I thought it might be helpful to let others know what we wish they would say to us.
“You look so good, but how are you really feeling?”
It’s hard for us to respond to comments like, “You look so good” (or …
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Helpful things to say to someone who’s sick
When I got my phone call with the diagnosis of mantle cell lymphoma (MCL), my instinct, like so many of us, was to Google. Today, 3 years later, I have learned about what to look for, what to avoid, and how to manage my natural wish to know as much as possible.
The following are suggestions to help others faced with a cancer diagnosis.
Google wisely. Google (and Wikipedia) are a reflex. …
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Googling cancer information: Tips from a cancer survivor
I talk with lot of physicians about the need to improve the quality of communications between physicians and patients. Regular followers of my work will know that I am an advocate for the adoption of patient-centered communication skills by the physician and provider community.
Physicians with whom I talk seldom disagree as to the need for better physician-patient communications. They know that physician communication skills top the list of patient complaints …
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Put patients to work during their wait time
“Here is a prescription for pain medication. Don’t drive if you take it. Call your surgeon if you have a temperature or are worried about anything. Go see your doctor in two weeks. Do you want a flu shot? I can give you one before you leave. If you need a wheel chair to take you to the door, I’ll call for one. If not, you can go home. Take care of yourself. You are going to …
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Hospital discharge planning: Involve the patients
Do you feel connected with your doctor or other health care providers? Do you partner with your providers? How important is patient engagement to you? What words do you use to define patient engagement? Do you consider yourself an empowered patient or health care consumer?
What is patient engagement?
Here is how I define patient engagement.
Patient engagement is a connection between patient, caregiver and health care provider. An empathetic and trusted relationship …
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How I define patient engagement
Risks are not certainties. They are the possibility that an activity will end badly. Risk is a handmaiden to almost everything we do.
Life itself is risky. Every decision is associated with the possibility of harm. Risk can’t be avoided, but it can be managed. Let’s talk today about the chances we take while living our everyday lives.
Risks are subject to a variety of misconceptions. What’s risky and what’s not is …
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Making poor choices by misjudging the level of risk
Turns out that while most of us (90%) would like be able to make a doctor’s appointment and check lab results online. 85% of us also still want the option of be able to talk to our physician face-to-face. These are the finding from a recent 2012 study conducted by Accenture.
These finding will no doubt come as a surprise to many of those high tech newcomers to health care looking …
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Health care is fundamentally about social interactions
The news of my wife Elaine’s primary peritoneal cancer 27 months ago began a fevered effort to learn all we could about her disease and our options. Peritoneal cancer, which is close in form and behavior to ovarian, is rooted in the abdominal lining. “Gold standard” treatments notwithstanding, the prognosis isn’t good. After a 12-36 month remission in which tumors are inactive, the disease generally returns, and a high percentage …
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Genomic medicine: How it can help cancer patients
I once had a patient in whom I found a small breast lump. She was only thirty-two, and the lump was soft, non-tender, and mobile. But it was new. She examined her breasts monthly and was certain that she hadn’t felt it the month before. And she had a family history of breast cancer.
So, I asked myself, what to do? Her age—as well as the lump’s characteristics on exam—made the …
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5 questions every patient needs to ask
Recently I was privileged again to be on the faculty for the Summer Institute of the George Washington Institute for Spirituality and Health in Washington, DC which draws participants from several health care disciplines, including medicine, chaplaincy and nursing.
One afternoon, we break up into interdisciplinary teams and interview patient actors as if we were a palliative care consultation team. For those who have not experienced patient actors in this context, …
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Why is whole person care so difficult to attain?
If you want to identify me,
ask me not where I live,
or what I like to eat,
or how I comb my hair,
but ask me what I am living for,
in detail,
ask me what I think is keeping me
from living fully
for the thing I want to live for.
– Thomas Merton
As a patient waiting to see my health care provider, I would adapt Merton’s template …
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Patients want to tell us their story
