Palliative care empowers and comforts individuals with life-limiting illnesses. It may be sought at any point and serves as an adjunct to other treatments provided it falls within someone’s goals of care. It is not just trendy terminology or a “feel-good” concept; it is the cornerstone of a good death.
So why, then, after weeks of advocacy, was it denied from my grandmother. Denial? Arrogance? The belief that despite multi-system organ failure at the age of 88 years old we might still be able to “fix” her? So that rather than allowing her to control her environment and provide us with the opportunity to say goodbye, she passed away alone, minutes after being offered a colonoscopy. In fact, minutes after refusing further intervention stating, “I want to go home”. Perhaps an option she never knew existed to her until that moment.
The irony is that the palliative care consult that we had so desperately sought was completed a few hours shy of her death. The physician even called my mom, and not once mentioned that my grandmother was imminently dying. I understand prognostication is difficult, but her heart rate was 133, her blood pressure was 70/40, and her blood glucose was 1.7. My mom deserved to know that the palliative care consult was just as much of a waste of our time as it was theirs.
When my grandmother was first admitted to hospital after her heart attack I was shocked she didn’t pass away that night. She had class III CHF, and worsening CKD secondary to T2DM. I recall being woken up at 6 am by my mom, thrusting her cellphone close to my face, as an internist tried to engage in a discussion of code status. My grandmother wanted to be a full code – was I supposed to talk her out of it over a broken telephone connection? She was competent and entitled to her decision. No one along the way took time to explain her medical conditions to her so I cannot fault her for any denial she was in.
It was a huge ordeal for her to get her pacemaker, and start dialysis, but by some miracle she stabilized. High-fives all around – surely things will go back to how they were – or so the family thought. My grandmother was bedridden because she was so weighed down by generalized edema; she was so constipated that she was asked to consume a colonoscopy-prep volume of PEG, and screamed from the cramping and bloating thereafter; she defecated in a diaper for the first time in her adult life and wept from the indignity as two nursing students wiped her in her shared room; she developed post-PEG PTSD to the point that she refused to drink water assuming we may have slipped PEG into it when she was not looking.
During the day she had leg cramps so severe that they contorted her in ungodly positions, but she was too weak to stand and stretch her calves. She went several days without sleep; my mom convinced that she wouldn’t shut her eyes because she was afraid she wouldn’t wake up if she did. She frequently moaned for someone to help her sit up at night so that she could hang her legs over the bed just to breathe. This was her life for nearly 5 weeks as a result of the medical interventions that helped sustain her.
That being said my grandmother was stubborn and her fear of death was a far greater motivator than her suffering. So I admit, her reluctance to discuss the alternatives was at least, partially, a self-created roadblock to palliation. However, no one ever took the time to explore her understanding of things, or ask her if she was scared, and what she was afraid of, and how we could best support her. No one tried to illicit goals of care beyond resuscitative measures.
I have to acknowledge that myself, and family members are equally guilty – we could not reach a consensus of how direct to be, with some assuming she was too fragile to have those conversations – and others not quite prepared to have them. That’s why it upsets me that the admitting team never once considered hosting a family meeting. We needed someone objective to assist in getting 6 caretakers to arrive at an understanding of how rapidly my grandmother was declining.
In having the benefit of sharing my experiences with death during residency, my mom began asking about palliation. Every time she was able to catch the rather elusive attending she would ask, “So at what point should we be consulting palliative?”. The answer she was met with was, either “not yet” or “not my problem”. My mom would ask me for suggestions regarding pain control, constipation, sleeping aids, dyspnea, and anxiety, and I would respond exasperated– “mom that IS palliation! Has palliative seen her yet?” Trying to insist that palliative care did not translate into giving up – it meant addressing the impact of her illness on her body and accepting that the damage was unlikely to be reversed.
As physicians there is an increased awareness that death cannot always be cheated, and so our role as “fixers” sometimes transitions into “facilitators” as we prepare our patients to meet death with grace and dignity. Everyone should feel responsible for failing my grandmother in her final hours – myself included. There is no reason why a dying woman was offered a colonoscopy minutes before she died. She needed the comfort of her children, and the power to pass away on her terms. The experiences I have had with patients stick with me– but nothing compares to the experiences I will have with my own family members. Death is not a job hazard in medicine – it’s a journey we embark on with our patients and their families. It is our job to ensure that the journey is as smooth as possible, and to keep our personal experiences with death close to serve as a reminder.