Now I know what a home death really looks like

I am a home palliative care physician working in what I felt was a pretty good system. But I was recently on the other side of the white coat, and now I know first-hand about some of the high points and problems in our system. My wife and I recently took in a dying cousin (we will call her H) with pancreatic cancer from another city in Ontario, to support her in a loving environment for her last days/weeks/months. I proudly bragged to her how excellent the home palliative care services were in our town. Several home care services had kindly been set up in advance by the Coordinator and I decided to take the first week off work to be there for H.

The private ambulance pulled up on a lovely sunny fall morning and the two attendants skillfully got H up to the third floor using a wheelchair with an electric tractor built in. We had prepared our guest bedroom for H – she had requested that level as it was quite private. There was a walk-in shower, and she was insistent on being near a shower. A personal support worker (PSW) was to come the evening H arrived and a lovely young woman came and identified herself as a PSW student who could unfortunately not do much. That night every hour I gave H a sc injection of hydromorphone via a port as she had been averse to a pump. The next morning a PSW was to come at 9:00 a.m. as the doctor and coordinator were coming at 11:00 a.m. The PSW showed up at 10:45 a.m.

H’s pain was severe and intractable - every drug imaginable, a celiac block, and radiation had been tried and she even had a two-week stay in a palliative care unit. So the doctor here prescribed a CADD pump to deliver an opioid at a slightly higher dose than H had been on. H accepted it now. The pump was finally set up about 10 hours after being ordered and H went into a deep sleep and could not be roused for 15 hours. She was pain-free but essentially non-responsive. We did not want her this deep this early in her course, so a nurse was scheduled to come to change the pump. But she did not show up until 5:00 p.m. the next day. A PSW was supposed to come to help bathe her but they too did not arrive. During the same stressful day, an occupational therapist who had been asked to come to assess the environment, called to tell us the very earliest she could come was in six days.

That night was horrifying – I felt like I was trapped in a B-horror movie. H groaned, and moaned, and writhed in pain. I gave her many breakthrough doses from the pump and also some sc methometrimeprazine but it made no dent in H’s suffering. In the morning a PSW came and she and I and my wife changed H’s diaper and gave her a bed-bath and changed her clothes. All the while we were keeping her mouth clean. Around 10:00 a.m. a nurse came and in conversation with H’s primary doctor (and me) we increased the pump dose once again to help ease H’s suffering. All of this was agreed to in full by phone by H’s next of kin, her brother. Soon after that, H became unconscious and very comfortable, with normal breathing. That afternoon several cousins and my youngest daughter came over. My youngest daughter applied cream to H’s face and arms while the cousins talked to H about old memories. We drank beer and bloody ceasars. Several people called and we put the phone to H’s ear but she did not show any reaction. We ordered Thai food for the gang and everyone was in good spirits knowing that H’s suffering seemed to be over.

That night we had been offered an overnight PSW and we accepted this. The lovely woman (who informed me we had met on one of my previous palliative home visits) sat with H, kept her mouth clean, bathed her and changed her diaper in the morning. It was the first time I got some real sleep in several nights.

After that, H remained comfortable and unconscious and surrounded by loving family and friends. We sat on her bed, massaged her, and my youngest daughter plucked her chin hairs. We ordered food every night and drank liberally. There was a steady flow of family. H passed away peacefully nine days after she had landed at our front door. The hydromorphone pump had done its job and by and large the services we received from the community were outstanding. H never did get to use the shower!

I learned some lessons from this experience which were known to me but are known better now.

1. Our home palliative care system is very good but imperfect. Government needs to support it better with money and resources. For example, we need to ensure that it is an attractive profession for nurses and PSW by ensuring adequate pay for them.
2. There are many gaps in how the process works. In my experience, this was demonstrated by fragmented communications between offices and people, no-shows (or ‘severely delayed shows’) by expected health care providers, multiple duplicative phone calls about pick-ups of equipment like CADD pumps and hospital beds, and the like. In H’s case even the pick-up of her body by the funeral home was plagued by miscommunication and a severe delay.
3. Nurses and PSWs are skilled professionals with specific skill sets. I was very impressed by their humanity and the quality of the work they did and my already high reverence for them has been further elevated.
4. When patients stay home to die, a huge burden of care is offloaded from the institutions to the families. I found segments of H’s care daunting. And I’m a palliative care physician and surgeon–imagine what it is like for the average person! I have a higher respect and regard for all families caring for their loved ones at home and will hopefully be more spacious about gaps or errors I perceive in a family’s caregiving going forward.
5. The carbon footprint of a home death is substantial. There are kilograms of wet diapers and pads, the sharps boxes full of needles, syringes, and glass vials that contained medications, various tubings and bags, foley catheters, and the list goes on. Everything ends up incinerators. Oh yeah, and lots of laundry.
6. When a patient dies at home it presents an opportunity for an intensely positive experience in which the extended family is brought together to help each other care for the ill person, and to reflect on old memories about her/him, and to be reunited with each other.

I was on call for home palliative care for all of Toronto two nights after H died and I think I listened to all those calls with a slightly different ear and heart. At least I hope I did.

Dr. Mark Bernstein is a home palliative care physician with the Temmy Latner Center for Palliative Care, Mount Sinai Hospital, Toronto. He is also a neurosurgeon at Toronto Western Hospital.