jenniferhawke.com

A kind publisher from HarperCollins sent me a complimentary copy of Katherine Rosman’s book “If You Knew Suzy”. An article by her in the Wall Street Journal received a huge response from the medical community and he figured I might be interested in her book.

He was right.

As most readers know, my experiences with death and dying on the hospital wards has been extremely personal and personally enlightening. Interactions with specific patients have brought up questions about my future place in palliative or hospice care as well as insights to my own capabilities and limitations of compassion. I think that part of the training to become a great doctor includes lessons in awareness of the feelings of others, how to read them, and how to provide what they need.

As we learned firsthand, a kind bedside manner is not merely a quaint characteristic you hope for in a family doctor. A doctor’s attitude toward a patient and the patient’s family colors every moment of a health crisis. It can help a patient to heal, keep those of us who suffer alongside her saner and healthier, and lower costs.

And yet for all the advances in medical technology and research, simple kindness from health-care providers is all too rare. A recent survey conducted by the Arnold P. Gold Foundation, which advocates for a respectful bedside manner, asked 600 people to describe their interactions with doctors. Twelve percent said they were taken care of by doctors who didn’t know their names. Twenty percent had met with doctors they found “rude or condescending.” Forty-seven percent said they had felt rushed by doctors.

~ “The Power of Compassion” by Katherine Rosman

Rosman’s mother died of lung cancer. Her book is a journey and a memoir. It’s a reporter following leads and a daughter opening doors.

I was thankful the book arrived just in time for Mother’s Day. How appropriate. I’m thankful that I haven’t yet lost my mother and this book made me appreciate the shortcomings and successes of our relationship.

It was also a good reminder that the fragile little lady in the ICU is someone’s mother, grandmother, daughter, sister, or aunt.

A friend (thanks, Roger!) passed along this NY Times article to me the other day week. It made me think about the physician’s role in end-of-life care. More specifically, it made me evaluate my position on end-of-life care and the type of physician I will become.

While there are universally accepted protocols for treating conditions like flu and diabetes, this is not as true for the management of people’s last weeks, days and hours. Indeed, a review of a decade of medical literature on terminal sedation and interviews with palliative care doctors suggest that there is less than unanimity on which drugs are appropriate to use or even on the precise definition of terminal sedation.

Discussions between doctors and dying patients’ families can be spare, even cryptic. In half a dozen end-of-life consultations attended by a reporter over the last year, even the most forthright doctors and nurses did little more than hint at what the drugs could do. Afterward, some families said they were surprised their loved ones died so quickly, and wondered if the drugs had played a role.

Whether the patients would have lived a few days longer is one of the more prickly unknowns in palliative medicine. Still, most families felt they and the doctors had done the right thing.

~ from the NY Times

The entire article is moving and worth a read. I found it intriguing because I really like dealing with old people in medicine. And I feel drawn to some of the harder specialties like oncology and palliative care.

As such, it is inevitable that the ethics of pain management and medication in end-of-life care have a few lessons up their sleeves for me. I intend to learn a lot from patients and their families on how they want to spend their final days.

Because when the time comes, I hope someone is listening to me.

His last few weeks went from bad to surprisingly good.

He drank himself into end-stage liver failure and his lungs and kidneys didn’t enjoy the ride. Intubated and sedated in the ICU, we watched Mr. Icterus’ blood urea nitrogen and creatinine (indicators of his kidney function) creep up every day. Similar to golf, a higher score is bad. We were medically treading water: not making any progress and slowly getting swept away with the current. We needed to know how long and how hard to paddle.

Between our team and social services, we managed to find a local family member. His brother said he hadn’t seen him in almost 10 years. There’s just something about drinking that seems to do that to families. Whatever the reason for the estrangement, there were another dozen siblings across the country. His brother said he called them all to let them know what was happening. No one returned his message. He finally came in to decide that he thought his brother would probably want to be comfort care only at this point.

“Comfort care” is an actual medical term. It’s a specific phrase we need to hear from family when their loved one has no medical chance of getting better. “Better” is not a medical term. It’s very subjective and one family’s “better” is not the same as another. At any rate, being “comfort care” means all medical therapeutics aimed at compensating for a particular organ’s failure are removed. Ventilators that breathe for people who can’t on their own are removed. Tube food supplementing a diet for people that can’t eat is stopped. Daily pokes and prods with needles for blood tests are stopped. The patient is often moved to palliative care or hospice. Pain medications are always readily available.

So, Mr. Icterus was moved from the ICU. He ended up in a room at the end of a long hallway with a bag of fluids and oxygen mask. He was still under contact precautions due to the MRSA we had grown from his sputum weeks and weeks ago. I donned my little plastic gown and went to visit him.

I was shocked at what I saw. No longer sedated to ease the discomfort of the breathing tube down his throat and to prevent him from pulling out all the lines snaking from his body, Mr. Icterus turned his bright blue eyes to me as I entered the room. I smiled and asked if he recognized me. It was the first time he had been conscious in 10 or 12 days. He nodded his head “yes”. I asked if he was in any pain. He shook his head “no”. I asked if he wanted us to call anyone. He looked around the room and shook his head “no”.

There was a signed card and small teddy bear by his bedside. I tucked the bear under his arm, adjusted his blankets and pillow, and perched on the arm of the chair by his bed. We visited for a little while. Well, I talked and he may or may not have listened. I told him that Christmas was just around the corner. I let him know what the weather was doing outside and what it was planning to do. I rambled for a few minutes while he looked around the room. He seemed to notice things in corners that I wasn’t seeing. When his eyes finally blinked and stayed closed, I carefully pulled my blue plastic gown off while telling him not to go anywhere because I’d be back later to check on him.

This went on for a few days. We followed the “comfort care only” guidelines. We were no longer drawing blood to do our daily CBCs and BMPs. He wasn’t getting any medical care other than his oxygen and he frequently pulled the uncomfortable mask off.

Two days before Christmas, I arrived for my morning visit. He furrowed his brow when I came in and seemed to try to speak. He started nodding his head and shrugging his shoulders even before I asked any questions. I asked him a few yes-or-no questions and got a variety of responses. Unsure of what he wanted, I tried to make him comfortable and rambled my usual morning chatter. Every day I asked if he was in pain, if he wanted his pillow adjusted, whether he wanted his feet covered with the blanket (for some reason they were always sticking out) and if I should call anyone to be there with him. Every day his answers were the same: no, yes, yes, no. That day I bid farewell and jokingly told him I’d try to sneak some Reese Peanut Butter Cups in if he’d get better. When he was first admitted, he used to sneak out of the hospital to smoke and eat Peanut Butter Cups when he was NPO (ordered to have nothing by mouth).

After our midday break for lunch, the intern told us Mr. Icterus died. A couple of hours later, I was on his floor rounding on another patient with the attending when they brought up the gurney with the dark purple bag for delivery to the morgue. A note in his chart mentioned that we were again trying to contact the brother that wanted nothing to do with him in order to get directions for what to do with the body.

Mrs. LOL died “afterhours” on a Friday night. One of her daughters stopped me in the hospital cafeteria last week to say “hello”. It was nice to see her so I could pass along my condolences. She smiled and touched my arm and told me their family genuinely appreciated everything we did. I appreciated the closure and found it went a long way to quiet the regrets I had for not staying longer with Mrs. LOL on the day she passed.

Mr. Icterus died in the middle of the day while I was still in the hospital. Even though I didn’t visit his room after he passed, I found it oddly comforting to know that I was there.

We have another alcohol-abusing admission this weekend. Before Mr. Icterus, they all looked the same to me. Now they all look like him.

My first patient might die this weekend.

Well, let me clarify. The 30-year smoker with chest pain who’s heart attack turned out to be extensive non-small cell lung cancer will probably die. But she has been discharged and is under the care of oncology. She won’t die while I’m checking her labs and vitals and chatting with her about grandchildren every morning.

I was planning to take this weekend off, but two of my patients dropped precipitously last week and I’m having a hard time not going in to check on them this morning.

It’ll happen whether or not I’m there, of course. I’m not sure if it will be the alcoholic with liver failure that went into acute respiratory distress and had to be intubated and moved to the ICU or the little old lady with acute exacerbation of her systolic congestive heart failure that fell and broke her hip a couple of weeks ago and just can’t get going after her hemiarthroplasty.

I need to remember this point in my medical career. The point where a patient’s death is still new and important.

I hope the death of my patients always feels important.

————
UPDATE: I found out that Mrs. LOL died last night shortly before 9pm.