What do we want in the last days of life? We want no pain. We want simple dignity, the physical kind where we clean ourselves, organize our medicine and command our bowels. As important is the complex dignity of choosing where we spend our final days, make tough decisions for ourselves and, as much as possible, live as a person, not a patient. It occurs to me that these critical …
What is quality in end of life care?
A perspective that comes from continuity of care over many years. An awareness of local resources. A sense of who a family is. An appreciation of the things that give life meaning and value to a child and family. Isn’t this care a lot to offer families of seriously ill children? What happens to all of this knowledge when a child becomes more ill and spends increasing amounts of time …
Training community-based pediatricians in palliative care
We will all someday die. No matter how good our doctors are, how many scans we get, how compliant we are with medications, how many cutting-edge surgeries we undergo, we will all die. That scares us. Most of us fear death: We do everything we can to avoid it, and when it inevitably comes, we struggle and refuse it. Similarly, when someone we love is dying, we want to do …
Addressing death is an important aspect of public health
One of my most treasured stories as an ED physician belongs to a lovely couple who valued quality of life. It was a routine day in the ED when an elderly woman rolled through the ambulance doors on a cold, narrow stretcher, unaccompanied by family. She was placed in bed 5, which is where we met. She was frail and her memory was poor. The EMS run sheet reported “change …
Quality of life: We say it, but do we mean it?
I loved my father. His doctor was fond of him, too. Three times we nearly lost him, and each time he pulled through, weaker, but enjoying life. When the magical recovery didn’t materialize, it was hard to believe that this was really going to be the end — hard for my family, and maybe harder for his doctor.
No one wanted time with my dad more than I did. I wanted …
Speaking up about hospice is not a betrayal of our family members
America is one of the sickest places on earth. We have the best diabetic care, but the most diabetes. First-rate cardiac care, but we are obese, hypertensive, inactive, and have high rates of heart disease. We are the world’s standard for cancer technology, innovation and access, but we have high cancer rates even while we waste most of the money from cigarette taxes on road repairs. At every socioeconomic level, …
How a hospice model can save American health care
Susan was 76 and dying at home in the days before hospice and before the use of the POLST form. A neighbor came in the relieve Susan’s daughter who went to the store. Suddenly Susan stopped breathing and the neighbor called 911. The medics came and, not having instructions to the contrary, did CPR and brought her to our ER unconscious and intubated. The ER physician called me in the ICU saying, …
When the POLST form is controversial
During a recent lunch with my daughter, a senior at the University of Maryland, she shared her frustration with a question she often receives: “So, what are your plans for next year?” She commented that while her life experiences through present day have been memorable, each stage has been predictable. Now, for the first time, she has more questions than answers. This ambivalence — this fear of what’s ahead — …
The palliative care discussion starts in the emergency department
Allow me to describe a recent case and ask your opinion. Today, you are the intake nurse at hospice and you are asked to evaluate Stan. This gentleman has incurable cancer, but treatment would probably prolong his survival. However, Stan has refused that treatment and been referred to you. It is your job to decide if he is “hospice appropriate.”
Why has Stan refused therapy? It is not that he denies …
Would you admit this patient into hospice?
It was probably the most awkward question I had been asked before, and I did not have an answer.
He was a middle-aged gentleman, neatly dressed — very simple and unassuming. He blended like a lifeless statue in the waiting area. What sparked my notice of him was his accompanying robust file, crammed with familiar pink discharge slips from the ED. He was clearly what we call a “frequent flyer,” but …
An innovative study in JAMA Internal Medicine on surrogate decision making has profound implications for how we take care of older hospitalized patients. The study, by Lexy Torke and colleagues at Indiana University, systematically described the involvement of surrogates in decision making for hospitalized patients.
Surrogate decision making refers to the phenomenon in which someone other than the patient is making or helping to make the key medical decisions. In older …
Surrogate decision making: Families are much more than visitors
Several years ago I took care of an elderly woman in the ER. She came in with a chief complaint of chest pain. She came in via ambulance and by the time she got to the trauma bay she said she was feeling a little bit better. She didn’t know she was about to die, usually people who are about to die look much worse.
She looked good, all things considered. …
Letting go can be the hardest thing in the world
He does not want to talk to me, that much is clear. He has had enough of doctors. He is a man of few words. His eyes do not meet mine. His coarse, calloused farmer’s hands play purposelessly with the starched white of the hospital bed sheet. The gentle hiss of his oxygen is barely heard over the hum of the city traffic below. Out of his element.
“Tell me, what …
Palliative care: The first conversation
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In 2005, my husband and I bought a small farmhouse in northern New England next door to Tom and Sally.
They were in their early seventies, married nearly fifty years, with a large family. Tom’s grandfather had built a farmhouse in 1900 on the family’s small pig farm. In the 1970s, Tom and Sally had parceled off the land and built a modern house for themselves, a stone’s throw from the …
When medical wishes are respected
Over the years, many people have shared with me their disappointment at the lack of acknowledgment from their physician when their loved one died. Especially, when their loved one had been a long time patient of the physician. In fact, many people have shared that they switched physicians because of what they perceived as a slight.
When people go to a physician for many years, especially the family physician, it is …
What to do when your patient dies
Today, I hesitated to refer a patient to hospice. The patient is perfect for that model of care. She has strong family and friend supports, multiple opportunities to maintain quality, independence and dignity, and while she has a disease we cannot fix, she will do very well with personal palliation. Nonetheless, I almost did not recommend hospice, because I realize that hospice is going to completely fail to take care of a …
After hospice takes over, what happens to the physician?
Ben’s first symptom was coughing up blood. The cancer had been silently growing for months, if not a few years. He had no pain or shortness of breath. The chest x-ray showed a “5cm L hilar mass” and the subsequent CT scan showed enlarged lymph nodes and likely spread to the liver.
“So Doc, what is it? A cancer? How much time do you give me?” All these questions on a …
After a cancer diagnosis: Giving a patient time
“No Margin No Mission” was a common saying when I studied about non-profits in business school. No matter how good your intentions are, whether it be creating new systems to get people access to care or opening a new animal rescue, if it couldn’t pay for itself it wasn’t going to happen.
So it should come as little surprise that an up and coming darling of CEOs of health systems is …
Using palliative care to save health care dollars
When counseling patients and families about end-of-life care, I try to focus on a simple, clear standard. Knowing that events are overwhelming and complex, I say, “Look at each treatment, each action and each moment and ask; How does it improve quality of life?” My goal is to reduce the choices during a chaotic time of life to the simple goal of comfort.
For example, most families are very concerned about …
The role of chemotherapy in palliative care
Case 1: You have a 94-year-old woman with multiple medical problems in hospice who develops a fever (subjectively hot to the touch), shortness of breath, and a cough producing yellow sputum. Her daughter asks if she can be treated with antibiotics “to make her feel better.” The patient is not well enough to make decisions, but in earlier conversations had stated a goal of remaining comfortable at home, while also …
When should you use antibiotics in hospice care?
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