find it.

For a variety of reasons, I am back inside my maximum overdrive of introspective over-thinking and mega-processing...

It tends to happen to me when I am working a lot and under socialized. Minimal life distractions. Lots of thinking time. I have been in Salt Lake Regional almost every day for the past 2 months.. If that doesn't instigate some introspection about what you are ultimately doing with your life, nothing will.

Also, I am living alone again.

A few things happened to me over the past few weeks.

First, I am pretty much absolutely positive that I want to do palliative care.

Previously, I had decided that ultimately I should get a real job in the real world after residency before making any more rash decisions about my career direction. I felt like this was fairly important to me because I have noticed that I often sound like a naive and clueless child when I talk or write about "life" or my work.

But this is what happened.

Two months ago, my geriatrics rotation flooded me with memories about how much I loved my hospice rotation in medical school.

I remembered emailing my mom about my hospice rotation at the time, and actually searched back and found that email.. It was pretty amazing to me that I had completely forgotten how much that rotation meant to me at the time, although end of life care has been something that has continued to interest me in residency.

On geriatrics in June, I had 3 or 4 of the most clearly meaningful experiences of my entire residency over the span of approximately 6 half-days with hospice.

I'll share just one brief story that happened to me while I was there..

I went with one of the home health nurses to a patient's house in West Valley. She was a woman in her late 20s, I guess about my age, who had a terrible, severe seizure disorder from some sort of genetic condition. She was also hearing impaired and communicated by writing and signing. She was married to a man who clearly adored her who was also hearing impaired. They had 2 very small children, one was 2 years old and the other was 4. The children were perfectly healthy. They were incredible. The communicated by signing to their parents while speaking what they were signing at the same time. The kids spoke both spanish and english and signed to communicate with their own parents. What this translated to was that the only way we knew what was being said between the parents and children was coming out of a toddler's mouth, and sometimes this was in spanish. It was so fascinating.

Anyway, the patient had recently been discharged from a hospitalization for uncontrolled seizures. The husband insisted on explaining to me through writing what happened during that hospital course. She was seizing uncontrollably at the time she was brought in to the hospital. Her husband and mother had been by her side most of the time, but because there were 2 small children to care for and they had gone so urgently to the hospital, at some point they went home to rest and gather belongings. When the patient woke up, she had no idea where she was or why she was even there. She became increasingly agitated. She could not find her phone to text her husband. And for some reason that I will never understand, no one communicated with her about what happened after she woke up. In fact, she was kept in her room with a combination of physical and medical restraints until her family returned.

When she left the hospital days later, the lack of communication about what was going on continued to worsen. She swore she would never go back. She wanted to stay home at all costs and decided to enroll in hospice.

Because of the severity of her epilepsy and a variety of other medical conditions, she did meet criteria to qualify for hospice. She started the application process and established with a home health nurse. Because of the seriousness and complexity of her neurologic disease, everyone intended for her attending physician to be her neurologist, who she had been seeing since she was a child. However, he refused to participate because he refused to agree that she might die within 6 months. Therefore, they had to identify another physician who would be willing to provide this statement before she could officially become a hospice patient. This all was happening in the setting of the patient being treated with an experimental anti-epileptic that the hospice physician had never heard of. And it was being tapered with a plan to restart Keppra. The husband had specific instructions which he was following very closely.

I saw her for the first time with the nurse in response to a plea from the husband to come over. The patient would not get out of bed. She had been sleeping for more than 40 hours. She missed her appointment with her neurologist that day because her husband simply could not get her up. When we saw her, we somehow did manage to wake her up, check her vitals, and get her out of bed for some food and water. She was clearly altered and was perseverating about things. She walked out into the kitchen, pulled down her pants, sat on a chair, and urinated. Then she started wiping herself with her pants over and over and over until we restrained her hands to protect her. We brought her to the sink and helped to wash her hands, and she wouldn't stop washing them. It was like every motion had no "stop" function.

The nurse was in an incredibly difficult position of a caring for a patient who had no doctor. She tried the neurologist, but this nurse and the neurologist had been engaged in a battle over the hospice decision, and he was quite angry with the whole situation and not very helpful. The hospice doctor simply didn't know what to do. She and the nurse created a plan which, I learned later, ultimately failed.

I learned the next week that the patient started seizing again. Unfortunately, the husband was lost about what to do and hospice privileges were still in limbo. She ended up going back to the hospital in status epilepticus. And that is how she died. In the same hospital she desperately begged never to be brought back to.

Following that, I have been at SLR, and the resident service for the last 6 weeks has been the death service. End of life matters have literally come up every day that I have been there.

Two of the more fresh memories that keep haunting me are the following:

I was on night float.

1. I went in to see this cute, frail, tiny 80-something-year-old lady who was admitted for CHF exacerbation. I just wanted to check on her because I was told she was refusing to eat. I introduced myself and extended my hand. She grasped it with such intensity that I was taken aback. Then, she looked me directly in the eyes and said "How do you expect anyone to get better in this place!? I haven't showered in days. I can't get out of bed because there are too many things stuck to me. I can't sleep with the alarms ringing. This must be what hell is like."

2. I was checking on a patient I admitted earlier in the week just to say hi and see how he was doing. He looked awful. He was 65 or so by years, but over 100 in age.. He had a history of laryngeal cancer which had been radiated and prostate cancer which had now grown itself into his bladder. He was strictly NPO because his aspiration was so severe he kept getting aspiration pneumonia. He had a J-tube for nutrition, a chronic indwelling cath, a PICC because his IV access was so awful, and an NG coming out of his nose because he had been vomiting coffee-ground emesis. He was supposed to be getting an EGD for that reason. He looked at me and begged me for some water. I was standing there in a yellow disposable "contact precautions" gown with blue latex gloves because of his history of MRSA. My face was covered with a mask because of his history of multi-drug resistant acinetobacter and stenotrophomonas, so he was also on "droplet precautions." And I suddenly realized that it was completely absurd to be denying this dying man water.

Finally, a friend contacted me to reach out to me about his friend's grandmother's situation. Apparently, she was just told she has a big tumor in her breast, but was also told that she's too frail for chemotherapy. The family is encouraging her to get a "needle biopsy" in order to find out if it's malignant, etc. Well, she's been resisting the family and doctor, saying "If there's nothing that can be done about something that's may kill me, why would I want to know it?"

I have discovered that it is extremely difficult to find a physician or family member who is willing to hear, "I don't want to know" or "I don't want to deal with this." Physicians want to know answers, above all diagnoses and prognosis, and will often go to very inappropriate extremes to find them; almost always with the patient hardly involved in the investigation or sequelae until it's too late to have any say in the matter whatsoever. Patient's give their blood, often not knowing why, get x-rays and CTs and MRIs that they never see or in some cases even ever hear about, and follow up when the secretary in the front tells them to, then one day they get told "you have a tumor. you need a needle biopsy." Or whatever the case may be. It's incredible. A needle biopsy is such a simple procedure that will yield a definite diagnosis, and it's like a fly to a light.....can't......help........myself......must......know......diagnosis.....Never mind that it's a painful procedure and often results in a terrible diagnosis, or in the case of cancer, an even worse course of treatment.

I guess I've come to feel that a patient has just as much right to no treatment or treatment that will make them feel better rather than live longer as they have to every treatment available in the scope of western medicine.

But as physicians, we all want to hang on to the possibility that the tumor is benign and then we get to swoop in and announce the wonderful news to our patient!!

You're not going to die ever.

Don't worry, we won't let you.