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.
As are many clergy, I am a pastor who is deeply involved in the medical lives of many of my parishioners. Because of what I have seen, particularly but not exclusively with end-of-life issues, I found myself increasingly averse to engaging the medical system for my own health needs.
However, I could no longer ignore some troubling symptoms. With trepidation, I ventured in.
I have been referred by my primary care physician …
Read more…
The vulnerability of patients needs to be respected and honored
Primary care physicians are the point of first contact that people like you and I have with a hospital or health systems. We are 13 times more likely to visit a primary care physician in any given year than we are to need a hospital stay.
Primary care physicians are very important. Yes they are they the first line of care for many people. The primary care physician’s office …
Read more…
The medical exam wasn’t designed to engage patients
Several months ago while visiting my ninety-eight-year-old grandmother, I knelt down next to her chair and looked her in the eyes.
“Grandma,” I said with mock seriousness, “I think you’re finally getting old.”
She laughed. “Well, yes, I think I finally am!”
In some ways, I wasn’t kidding. My grandmother has always been active and fit, gleefully turning a somersault for her five-year-old great-grandson when she was seventy-five. Taking care of “the old …
Read more…
How do the elderly become more resilient?
To have cancer is to change forever. It is a devastating declaration. Each of us copes with the diagnosis differently. How people adjust and move on with their lives are lessons in humanity.
I take care of a patient who explained to me how he deals with incurable cancer. Stan is active and able to enjoy grandchildren, friends and hobbies. He describes himself as happy, despite his terminal diagnosis. The key …
Read more…
To survive with cancer, you need to accept that you are going to die
Recently, my mother died.
She was giving, kind, funny and would do anything in her power to help those who needed her. As a single parent divorced from a drug addict, she was all that I ever truly had in the realm of parenting and, as a result, she was everything to me. And she touched and was loved by so, so many people. She also had asthma and, most years, …
Read more…
My mother fell through the cracks of the system and died
A while back, my brother-in-law was experiencing low back pain and my sister told me that the doctor had diagnosed it as a “herniated disc.” The conversation eventually evolved into a discussion about the difference between a “herniated” disc and a “ruptured” disc. My position was that ruptured was worse; my sister’s that they were the same thing. Since inquiring minds want to know these things, I decided to look …
Read more…
Shared language between doctors and patients
For the past month, the case of Amanda Trujillo has resonated deeply among nurses, triggering an avalanche of postings on Facebook, Twitter and in the nursing blogosphere. Trujillo is the Arizona nurse who was fired in April 2011 after providing education and making a hospice care consult request for an end-stage liver disease patient. This patient was slotted for pre-transplant evaluation …
Read more…
Why physicians should care about Amanda Trujillo
It is said that “turn around is fair play.”
So if providers (physicians, hospitals and other health care professionals) expect patients to become more engaged in their own care, isn’t it fair for patients to expect their physicians to also get more involved in their care?
If you look closely at “proxy measures” for physician engagement, you will see that this is a legitimate if not equally important line of inquiry.
Hello? Hello? …
Read more…
Why patient engagement is reciprocal
Hypertension was the trigger that forced medical cost awareness to the forefront. My doctor decided that with my rise in blood pressure it would be prudent to prescribe a blood pressure medication and order a nuclear stress test. With only a catastrophic insurance policy and a $5000 deductible it was imperative for my financial health to know the cost of both the drugs and the procedure up front.
The prescription was …
Read more…
Question the price of drugs and medical procedures
Here is a toast to the miracle of love. Not to the romantic, chocolate, dance club nightlife type of love. Not warm sandy beach vacation, new bigger home and grand Thanksgiving dinner love. Not even baby’s first words love. I mean power passion that gets us through the hard times, type of love.
Edna and Ken are 90, married and both have active cancer. They have been partners for 62 years. …
Read more…
In love there is a life giving force
No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because death is very likely the single best invention of life. It is life’s change agent. It clears out the old to make way for the new.
-Steve Jobs, …
Read more…
How to get ready for death
One morning this May, I woke up with a stiff neck. I applied hot and cold therapy all day and took an Advil before bed. By the end of that week, I was unable to comfortably move my head and I was feeling numbness down my left arm to my fingertips. I saw my doctor within 24 hours of calling his office. After a brief exam, he was sure of …
Read more…
The long term cost of a pain in the neck
Visiting someone who is dying or critically ill is an experience many of us will have in the course of our lives. Whether your visit is to be in the person’s home, a hospice or a hospital, there are a few rules of thumb to guide your time together so that it can be mutually satisfying.
This post introduces some of the basics.
1. Call ahead. Find out what prime visiting times …
Read more…
Preparing for your visit with someone in hospice care
I found a recent Associated Press article on an aspect of the new health care law that many of us may have overlooked. It requires consumer-friendly summaries of what insurance plans cover, a provision that now seems to be at risk. The insurance industry is up in arms about implementation costs and added regulatory burdens. (There’s a good story at NPR, which includes a link to an example of what …
Read more…
Why we need to go from e-patient to i-patient
A great deal of effort in the current health care environment is being put into improving communication – between patients and families and members of the health care team, among family members, and among members of the team. The case can be made that good communication is at the heart of patient safety, cultural sensitivity, and the pillar of palliative care — aligning patient’s wishes and goals with treatment plans.
So …
Read more…
Good communication in health care is about listening
I love listening to life stories. As a hospice chaplain, I loved sitting with our patients and their loved ones engaging in what many hospice teams call “life review.” When did you meet your spouse? When was Reggie born? What is your favorite holiday? When did you learn you were ill? A few simple questions and the stories come pouring forth.
Of late, I’ve been listening to the life stories of …
Read more…
How will the Baby Boomers age and die?
For health care professionals, patient engagement is the holy grail of health care. It is the key to patient adherence – a prerequisite to achieving better outcomes, fewer ER visits and hospitalizations and more satisfied patients. It is easy to recognize an engaged patient – they do what their health care providers recommends …what their health care team knows what is right for them.
But doesn’t engagement depend upon your perspective?
In …
Read more…
Patient engagement is the holy grail of health care
This is a response to Deb Discenza’s article requesting a one page informational sheet informing a patient about hospice or palliative care.
This would allow the patient and their family to make decisions regarding end of life care before it becomes a necessity. I am a crisis care hospice nurse. I am the one who comes to your home, whether it is a million dollar beachfront mansion, or a single wide mobile …
Read more…
Why do doctors delay hospice referrals?
So, Megen at Not Nurse Ratched wrote post recently about therapeutic presence. The following passage really caught my attention: “Question is: are there more things in nursing, Horatio, than science can explain? Can we touch patients and zap them with calmness or take away their pain? Can we, by our mindset during our provision of care, substantially affect our patients’ outcomes? Can any of this be taught? Can we do …
Read more…
How touch can calm patients
People often ask me how I became a hospice volunteer. For the record, nobody is more surprised than I am. You know how some people can walk into a patient’s room, plump pillows, and make all the right comments? Years ago, I was not that person. I never really felt comfortable visiting sick people. Working in the healthcare arena seemed depressing. Besides, I had made a conscious decision to become …
Read more…
How I became a hospice volunteer
