"I used to plant a seed of kindness in me"
A hospice volunteer reflects on how the experience changed her, and how hospice itself has changed.
I’ve been thinking about hospice lately. Two close friends are assisting elderly parents in the final stages of their lives, with hospice visits to their homes. Another friend is herself grappling with a dire illness and is seeking inpatient hospice care. Meanwhile, ProPublica and the New Yorker recently published a chilling exposé of abuses in the hospice industry, mainly by for-profit actors. This is apparently part of a shift in the industry over the past two decades. Certainly my own memories of hospice care, when my mother received it in the 1990s, are much more benign.
My friend Dale spent years as a hospice volunteer, so I asked about her experiences and her reaction to the recent investigation.
CATHY: A defining feature of the third age is that the end of life is starting to come into view. For our parents, certainly, if they’re living, but also for ourselves and our spouses, partners, siblings, and friends. In many cases hospice will be involved; indeed, half of all Americans now die in hospice care.
Recently ProPublica and the New Yorker did an investigation that uncovered exploitation by the for-profit sector of the hospice industry. Fly-by-night operators enroll people who are not really near death in order to get Medicare reimbursement. They provide care that may be substandard, in some cases blocking the patient’s access to more appropriate care. Then they dump people if they don’t die quickly enough, because having patients enrolled for too long can jeopardize Medicare payments. There are calls for reform from Congress and even from within the industry.
But I know that your experience was good and was mainly in the nonprofit sector of hospice, is that correct?
DALE: It was entirely in nonprofit. It was at Community Hospices, which used to be part of the Washington Home, and then for a short time at Montgomery County Hospice in Maryland. I would visit people mostly in their homes, but also in the inpatient unit of Community Hospices.
From movement to industry
CATHY: ProPublica said that when hospice started in this country in the 1970s, it was a humane movement to create a better end-of-life scenario than was the norm at that time. It was driven by values of caring and helping, not by profit motives. But by the 1990s, private equity firms and similar players entered the market, taking over hospices or setting up new ones on a for-profit model. Does the original vision of hospice as an ideals-driven movement still exist in the nonprofit sector of the industry?
DALE: I believe the vision persists, but it’s been hard for nonprofit hospices to survive. Medicare reimbursement, especially for the last days of a person’s life, hardly covers the drugs and care needed. I know there are legitimate for-profit hospices. But I also read the New Yorker article, and the extent of fraud and abuse is horrifying. And clearly for-profit hospices are taking over because nonprofit hospices often can’t survive.
I started volunteering at hospice after my first husband died of colon cancer in 1997. It was not an easy death. The last day or so of his life we contacted hospice, but it wasn't the amount of time that you need to stabilize somebody's symptoms and give them time to be with family. After he died I thought there must be something better.
CATHY: My mother died of colon cancer in 1999.
DALE: Oh, wow, so you know.
CATHY: We had hospice for maybe the last two weeks of her illness, I'm not sure. It was a nonprofit hospice in Rhode Island, and I don't remember any concerns with it, but that’s now more than 20 years ago.
Listening to the patient
CATHY: I read your notes for training new volunteers, and one piece of advice you gave was to listen to the patient.
DALE: An important lesson I learned was from a mistake I made. I was visiting a patient who was dying of metastatic cancer. I was with her several months, and we talked a lot before she began dying in earnest. We got to know each other. So when it became very, very difficult, she said to me, “I didn't know dying was so hard.” I tried to reassure her, and said, “We'll be with you every step of the way.” As I drove home, I thought about my response. I think she wanted to tell me more, and I very much wish I'd said to her, “So what's the hardest thing? What is it? What is the toughest thing you are feeling?” And then let her talk about the pain she was experiencing.
The first person I visited had ALS, and I saw her for almost a year. But I didn't realize until about a month before she died how successful she'd been in her field, and the innovations she'd made. I wish I'd asked her more about her work. I think I was reluctant to because I didn't want her to feel like that part of her life was over. So from that I learned to listen to somebody and explore the legacy they want to leave – what's important that people remember about them.
CATHY: You also advised volunteers to go outside their comfort zone.
DALE: Yes. I realized that when I visited a woman in a not very safe neighborhood of DC. Her experiences were very different from mine. She'd been a patient at St. Elizabeth’s [psychiatric hospital], and she lived in poverty. She was a Medicaid patient, as were many patients of this nonprofit hospice. Despite the differences in our backgrounds, of all the people I remember in my heart, she's probably the one I think of most often. There is actually a very sweet story. I was mentoring a new volunteer who was African American, and she came with me to visit this patient, and she plaited her hair. It was lovely because it was so personal and a way of showing someone that you care about how they look. As a person is kind of disassociating from their body, you’re saying, no, your body is beautiful.
The need for choice and control
CATHY: You mentioned that family members can be difficult, and I assume patients at times can be difficult too.
DALE: I had a husband whose bedroom was on the first floor of the house. The patient, his wife, was in the basement. The husband had a disability and it was hard for him to get downstairs, so he had cameras placed in her room. He was always fighting with someone, especially hospice. And he asked me to do some things that I didn't feel comfortable with, like go and take her stuff out of storage so that he could hide it from her son. Of course I did not agree. But I also realized that he was going through a very difficult time. I had to remind myself of that, because my first reactions were: No.
CATHY: You spoke about loss of control in serious illness. Do you think that shaped the way patients and their families responded to you?
DALE: It's important. One woman I visited was in her nineties. She wanted to write her memoirs and focus them on the small business that she had developed. She was fairly confused. She had boxes of invoices from the business, but not much else. My job was to go through the boxes and find things, which most of the time were not findable. It was clear that she needed to be in control of this whole process, and she needed to remind me each time that I, of course, was temporary, and she could fire me at any time.
I also think of my first husband, who was just like a prince when he was sick. He was also a type-A personality, which I think is why he pursued treatment and refused hospice until the very end, even when it was clear that treatment wasn't helping. I took care of him but he walked me through everything, like flushing his IV tube before administering drugs. He'd always been in control, and it was important to him not to lose that identity.
Witnessing his intractable pain, when forced to choose between treatment and hospice, made me more adamant about the importance of providing aggressive palliative care without requiring the patient to stop other treatment. My experiences as a hospice volunteer back this up. We need to integrate hospice expertise into the standard management of serious, debilitating illness.
Recovering hospice values
CATHY: You told new volunteers that being a hospice volunteer gets you in touch with your own kindness and caring. I thought that was interesting, because presumably people volunteer out of altruism. You and I have both volunteered as ESL teachers – in fact we taught together at one time. We did it to help people, but there’s always something in it for us, too. I feel like teaching ESL got me in touch with a “me” that maybe is a little bit better than the “me” that’s usually there. What did you get out of being a hospice volunteer?
DALE: What you just described: it gets you get in touch with your own kindness and nurturing, which you may not have an opportunity to be in touch with during your regular life. Each time, before I went in to visit a patient, I used to plant a seed of kindness in me. It was a ritual that made me feel like I was becoming someone I liked.
CATHY: Looking at the ProPublica investigation, what do you think needs to happen to bring the hospice industry back to the original values of the movement?
DALE: It's hard to know. Someone sent me an article about private equity firms taking over health care generally. It's booming.
CATHY: So the problem is broader than hospice.
DALE: There’s a lot of fraudulent billing in Medicare, but it’s egregious in hospice. The amount of abuse is shocking, especially when it involves people who are dying.
CATHY: Apparently the industry is very lightly regulated, so maybe that needs to change. It's one thing to have a movement as it was in the 1970s, that’s not very big and is driven by good-hearted volunteers. It's another thing to have a $22 billion a year industry that’s mostly funded by taxpayers. And for-profit operators are now 70% of the hospice sector. So how would a family go about getting the kind of hospice care that you provided, and that other ethical sectors of the industry provide, and avoid falling into the hands of profiteers?
DALE: I think you need to investigate the hospice. Is it for-profit or nonprofit? Talk to people who have received care there. Not all for-profit hospices are abusive.
Importance of family leave
CATHY: On a related topic, you've advocated for better family leave policy in DC.
DALE: It's so important. Paid family leave isn’t just about parental leave when a child is born; it's about being able to be with your loved ones when they're dying. Once a patient's symptoms are stabilized, hospice is a time for a family to be with each other, to say goodbye to each other.
I had a lovely experience with a man who was in his last weeks. His wife would go off to church meetings in the evening when I came. But one night his wife had invited the whole family over, and everybody was there. It was his birthday, and they had a birthday party for him downstairs while he and I were upstairs. And then, two by two or three by three, they all came to say happy birthday and to say goodbye to him.
I visited a fair number of patients on Medicaid. They had adult kids, but their kids couldn't afford to take time off from work. And even if their employer said, okay, you can have this day off – that's just a day. They couldn’t take a week off and keep their job or earn the income they needed. What kind of society are we if we don't make it possible for adult kids to be with their parents in their final days? I was able to take time off work and not get paid when my first husband was sick because we could afford for me to forego my salary. And it was a gift to be able to be with him in those final days.
Thanks to Juan Morales and Orquídeas Tepoztlán for the photos of orchids.
Moving interview with important information. Palliative care is something folks don’t seem to know much about. I will make note of it in my end of life papers. I appreciate the warning that hospice care has changed . The photos you included are lovely. Thank You.
Thank you, Cathy.I really liked Dale saying ¨I used to plant a seed of kindness in me.¨ Something for all of us to remember...even when we aren´t doing the kind of work she was. How much better the world would be if we all tried to plant a seed of kindness, nuture that feeling? Too much of the time we feel despair over all of the injustice and inequality. We all do what we can about that, but we need to carry out our daily life with an ongoing attention to kindness. It is so much nicer to be waited on by a polite shopkeeper, be respectful of the people around us, (as my mother used to say,¨Please and Thank you go a long way,¨ )