The Compassion Test
Every patient is unique. As with all people, they each have their personality. That said, there are choices that hospice patients make that put them in a subset of the population. Accepting hospice care is a choice, and there is a further choice to have a comfort care volunteer visit. I think that these choices tend to select for particular types of people. Those choices may be why most people I have worked with are, at the least, pleasant and often quite lovely. Most hospice patients are grateful for the care they receive. Occasionally, a patient is less than pleasant and not so appreciative. It is a challenge to develop a connection with these folks. It is still possible to learn from the overall experience. These patients still need our help, perhaps more than most. They are still transitioning to that great leveler and must come to terms with the end of life to whatever degree they can.
Usually, Hospice volunteer coordinators are careful about which volunteers they assign to these irascible patients. And so it was on a brisk October day a year ago that I answered a call from my volunteer coordinator. She did not say hello, just launched into a warning, "I've got a patient for you, and she's going to be a challenge, but I really think you're the only volunteer who might be able to spend time with her. I doubt I could."
"It's a good thing you aren't in sales!"
She laughed. "I just want to let you know this one can be difficult. I met her and she insists she wants a volunteer, but boy is she short-tempered." This would prove to be an understatement.
She continued," Now, if she gets to be too much, even in the first visit, you tell me and we'll cut her loose."
A couple of days later, I walked into Nancy's shared room at a local skilled nursing facility. She was a small pale woman with sparse gray hair and a perpetual frown. She wore a plain hospital gown. This was unusual, as patients usually wore their favorite clothes for the reminder of home and to assert their personalities, to retain something they could control. Later, Nancy would tell me that she did not want the caregivers touching her stuff.
I knocked on the open door, said hello, and gingerly approached the bed. Nancy looked at me with angry eyes.
"Who the fuck are you!"
After I explained who I was and why I was there, she still treated me like I was suspect.
"OK. But if this doesn't work out today, you're fired."
What was I supposed to say to that? I chose humor.
"You can't fire me; I'm a volunteer. And besides, I quit!" I turned and made like I was leaving. After a few steps, I turned around, pointed at her with my index finger, and cocked my thumb. She shook her head, smiled slightly, and relaxed a bit while looking down at her sheets, "Cute!"
“Forgive others, not because they deserve forgiveness, but because you deserve peace. ”
During that first meeting, like other first meetings, we discussed our lives and interests. This somewhat painful conversation gave me a good idea of what I would deal with when I visited Nancy. For Nancy, her entire life had been one horrible disappointment after another. No matter what I asked her or told her that elicited a response, she was dyspeptic and negative on a level I found disturbing.
When I asked if she had children, she made a face as if she had just bitten into a piece of fruit with a worm. "I have two shits. And I mean shits. I think they came out my ass, not my vagina. They are both the biggest wastes of flesh…shit, ever!"
All I could muster was, "ummmm … OK."
"No, it’s not OK! My kids are losers."
I recovered quickly and asked, "Why do you say they are losers?"
"One is a druggie and the other one, I think he's a sex addict; he got two girls pregnant in high school. Two girls, like at almost the same time. Who does that?"
'What is he doing now as an adult?" I asked, eager to leave this negative talk behind, hoping to hear that this child managed to own his teen mistakes and build a life for himself.
"Oh, I have no idea. The day he graduated from high school, I kicked him out and I haven't heard from him since."
And so it went for the whole visit. Nancy enumerated a catalog of all the terrible people in her life.
When I mentioned my mother, Nancy felt the need to say, "My mother was a raving bitch. I'm fucking glad that bitch is dead. "
I must have had a look of astonishment on my face because she looked at me and then added, "Oh, I'm not kidding. I hated her. The day of her funeral I went just so I could spit in her face and leave. Good riddance!"
To punctuate this, Nancy leaned over the bed rail and spat a glob of phlegm on the floor.
Her husband was a "worthless, cheating fuck” she kicked to the curb during her second pregnancy.
When I asked about her friends, she just scoffed. And so it went, a near-constant stream of vitriol.
When I asked her for her thoughts about being in Hospice care and her life winding down, she said, "Oh, yeah, they say I'm dying. I don't care. I've had a terrible life. Maybe death will be better. At least it'll be quiet."
She paused, raised her index finger quickly, and added, "I'm no suicide! I'm no pussy quitter. I'm not some loser."
At the end of the visit, I was exhausted. Not only was Nancy the nastiest, bitterest patient I had encountered, I think she was the nastiest, bitterest person I've ever met.
And that's why I was surprised and conflicted when she invited me back. "I guess that was OK. Why don't you come once more and we'll see?"
As I drove home, I was reeling from the experience. I considered how that level of bitterness had to be toxic to everyone in Nancy's orbit. It could well be harmful to me. I thought about this for the next few days as I weighed the two options.
I could drop Nancy as a patient, and no one would fault me. But again, she needed someone in her life, even if she did not know it. I could see how she could quickly become abusive. And I did not want to take abuse willingly. I experienced this abuse secondhand when I reluctantly visited her a second time.
As I walked into Nancy's room, I collided with a Certified Nurse Assistant (CNA), and she looked up at me with tears in her eyes. I thought I had hurt her or scared her. I apologized profusely. I had been in my little world, not paying attention to where I was going. But then, she said it was not my fault, and that she just had to get out of there. I walked down the hall with her and asked if I could help. She looked so distressed.
She told me that Nancy yelled at her and called her names, and belittled her the entire time she was giving her a bed bath and changing her bedding. I told her I would have a chat with Nancy. Before I went back to the room, I spoke with one of the admin charge nurses, and he confirmed for me that Nancy was, in fact, quite abusive to several staff members. He said that Nancy was on her second warning and could be kicked out of the facility if the behavior continued.
Back in Nancy's room, I asked our difficult patient what had happened with the CNA.
"I don't like her. It's nothing personal. I just don't like her."
"Nancy, you may not like her, but you better pretend from here on out that you do. You need to make nice with all of us. Or you can be evicted and I'll also ask to have you removed from Hospice service. You can talk all the trash you want and complain and be as miserable as you want, BUT you are not to beat up on or disrespect any of your caregivers! We are NOT here to be your whipping posts. There are plenty of other pleasant, grateful people we can take care of. You will end up alone, with no help."
Nancy turned red. Then she turned white. Then quietly, but exasperated, she said, "Oh, fine, whatever."
Right then, her roommate had a loud coughing fit, and Nancy glanced over at her in disgust and said, "Why can't she just die already? She kept me up all night with the hacking and coughing. I was hoping she would just choke to death."
“Wretched are those who are vindictive and spiteful.”
I continued to visit Nancy for several weeks. Her vitriol never abated. She constantly espoused her hatred for everyone she encountered in life. I shudder to think what she told people about me.
When I tried to talk to her about her transition and establish some death work, Nancy waved me away and said she did not care. "When I die I'll be dead, worm food. What's the fuss?"
"Do you want to know more about what we see patients experiencing at the end?"
"I assume I'll stop breathing or have a heart attack. Whatever, I'll be dead."
"It is usually fairly peaceful and the palliative care folks at Hospice will make sure you are comfortable."
"I'm not afraid of a little pain. I'll be over soon. Or whatever, give me some heroin."
'You mean morphine?'
"Yeah, that stuff. Fuck it, whatever."
I visited with her for an hour and a half once a week for a little over two months. The last time I spoke with Nancy, she was so weak that she couldn't muster the strength to express her ever-present hatred or complain much. After about half an hour, she waved me away unceremoniously and fell asleep.
I stopped at the main care desk to confer about Nancy's status. We all agreed that she was declining rapidly and would be passing soon. We also established that no one besides me and the hospice nurse ever visited her, so there would be no family or friends to sit with her while she died. I asked the nurse to call me when she got close so that I could come to be with her, so she would not die alone (as much as she did not care for anyone's company).
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
A couple of days later, one of the nurses called to tell me that Nancy was close to the end. I was free, so I headed over. On the way, I tried to steel myself for a lonely and sad affair. I told myself it was OK that I would be the only person there and that it was a part of my volunteer job. No one dies alone in Hospice care. I meditated for a few minutes just outside the facility, and with a big sigh, I opened the door.
A few minutes later, I walked into Nancy's room. It was not sad or dark or lonely.
There were people in the room. There were tea-light candles along the windowsill, and soft Celtic music played. There were flowers on the bedside table and some petals decorating a beautiful yellow quilt covering Nancy. And she was no longer in her dreadfully depressing hospital garb; she was wearing a lovely pink and blue satin nightgown! A staff member was stroking her hand. Another had one hand on her shoulder and a rosary in the other as she whispered the prayers.
I must have had a strange look on my face because a couple of the staff I knew waved me into the room. I looked carefully at Nancy. She was unconscious and breathing slowly. She was paler than ever, with a slight blue tinge. But she looked peaceful, with no frown, like every other time I saw her. She looked happier than I'd ever seen her. For the next half hour, a constant stream of people came in to say their goodbyes. They would stroke her hands and face and whisper to her and sometimes shed a tear. A few of us talked about our experiences with Nancy. Most everyone felt bad for her because she seemed very unhappy with her life.
A nurse signaled to the rest of us, and we quietly watched Nancy take a few slow breaths. Then she seemed to hold her breath for several seconds, then she let it out long and slow with a little rasp at the end, and her chest did not move up again. She was gone; she escaped this life she claimed to dislike so much.
A few of us hugged her and said one last goodbye.
I stayed and spoke to a few of the staff about this experience. Everyone acknowledged that Nancy was a difficult patient, and a couple used much more robust language. But they all felt that she, like everyone, deserved to die with dignity and with loving people surrounding her.
One CNA told me, "We always try to give patients a peaceful end, but in Nancy's case a few of us wanted to do more, to kind of compensate for the possibility that she did not have much love during her life. At least we made sure she had love at her death."
The lessons from spending time with Nancy at her end are reasonably clear and something most of us understand; our treatment of others and our attitude in life affects our quality of life and the connections we can form. Nancy was entirely alone at the end of her life, probably because, for whatever reason, she was bitter and angry and pushed people away.
I think the behavior of the facility's staff is more meaningful, poignant, and instructive. Despite all the hardship that Nancy brought them, they continued in their commitment to outstanding care and support at the time of death. They lived the way they believed one should live and did not let anything alter the quality of care they chose to deliver. They showed the power of forgiveness and love. That, for me, was a great example of how to live and how it is important to remember that every patient, every person matters.
“It is easy enough to be friendly to one’s friends. But to befriend the one who regards himself as your enemy is the quintessence of true religion. The other is mere business.”
Moreover, these caregivers showed compassion in the most difficult of circumstances. It is easy enough to be kind to kind people, to be friendly with our friends, and to continue to help those who show gratitude. It is a true warrior of caregiving who can ceaselessly give care, to the best of their ability, in the absence of kindness and gratitude.
Maybe Nancy's mission, her place in the Divine Plan, was to test our resolve; to challenge our compassion and ability to provide the best death care to every patient, regardless of their behavior. I spent that last afternoon of Nancy's life with several people who passed that test with flying colors.
