At-home palliative care: ‘There was garbage everywhere and a smell you couldn’t ignore'

I distinctly remember, about halfway through medical school I thought, “Someone should write this stuff down.” From objects found in orifices where objects don’t belong, to the grossest but most satisfying abscess drainages, to Jerry Springer level family drama, practicing medicine can sometimes have the best, most unbelievable stories.

You'll never know what you'll find

As a family physician with a current focus on palliative care, I have worked in many different settings throughout the last 12 years of practice. My favorite, though, is home visits. Seeing a patient in their own environment gives you insight into their overall well-being.

I learn a lot about my patients in these instances and their circumstance adds a layer of understanding, which I believe allows me to treat them better and more holistically.

With home palliative care, our goal is to palliate people in their home, often allowing them to die comfortably in their own surroundings. Sometimes, however, their home is a less-than-ideal place.

I once walked into a man’s downstairs apartment to find him bed-bound and alone on a hospital bed in the middle of the living room. On his bedside table were three urinals, full to the top. Directly next to the urinals, was a glass of water and a snack. 

He asked me to empty his urinals for him in the kitchen sink because his toilet and bathroom sink no longer worked. There were stacks of dirty dishes piled high in the kitchen, presumably from days ago when he could walk, or possibly from the family member who rarely visited.

So, the nurses visited him twice a day, the personal support workers came twice daily as well, and we made it work. His wishes were respected, and he died comfortably at home.

Going into the homes of hoarders

In most cases, when people apologize for the mess in their home, there usually isn’t much mess to apologize for. But hoarding is not just something seen on TV. I was once in a hoarder’s house who had a pathway from the door to the patient’s bed. Every other area of the house was stacked high to the ceiling with junk. From old newspapers, to piles of clothes, to knick-knacks, to plain old garbage.

The piles were on banisters, tables, and chairs. It was heartbreaking for both the patient and her daughter. Luckily, we have an incredible community palliative care team and our social worker was able to arrange help through volunteers to begin cleaning out the house.

Guess the pill...

Home visits give me insight into my patients' lives. At the office, they bring their list of medications and it’s easy to believe that they are being treated appropriately and taking the right medication. But home visits allow me to see what they’re actually taking. Sometimes, I walk into a patient’s house and the pill bottles are everywhere. Some bottles are unlabeled, others had been discontinued months ago.

Once, I was shocked to find out my patient was taking her dexamethasone like candy, thinking it was her breakthrough pain medication. On another occasion, a patient showed me how he would pour his liquid morphine directly into his mouth, guessing the amount, because he couldn’t be bothered with measuring. And yes, his “swig” was much more than the prescribed amount.

More often, you'll encounter a lot of love

Home visits are just so much more intimate to me than any other medical visit. And the surprises aren’t all bad! I once had a patient in his 60s with metastatic cancer, who, along with his wife, continued to foster babies in their home. Near the end, his wife was caring for an infant (exceptionally well I might add), as well as her dying husband. The love in that home was palpable at the front door. At the time of his death, he and his wife were surrounded by their many biological and adoptive (now adult) children, and foster children. 

I consider myself very lucky to do what I do. Community palliative care can be emotionally difficult at times, but is also exceptionally rewarding. With every home comes a new experience—and you never really know what you may be walking into.