Building an Archive: A Hospice Nurse on Working towards a Good Death

As told to Charlie Buck

Marc Goodman works as a registered nurse case manager with Casa de la Luz Hospice, providing end-of-life care to patients in Tucson. Hospice care calls on professionals, volunteers, and family members to help address the physical, psychosocial, and spiritual distress that the dying and their family may face. COVID-19 brings additional challenges to end-of-life scenarios, requiring workers to be compassionate and creative.

Marc Goodman: I use the word “intimacy” to describe the work hospice nurses do, because it’s incredibly intimate. It may be with people you barely know in a personal sense, but you are working in perhaps the most intimate part of their lives—their dying. Obviously there are critical medical things we do, but a lot of hospice nursing is trying to help people through a difficult time and make it better than it might be otherwise.

I’d done lots of different things before becoming a nurse at age 50: I worked in retail, in food service for 12 years, which was good preparation for psychiatric nursing. Three years of psychiatric nursing was preparation for everything that followed: mental health issues don’t stop once patients are reaching the end of their lives. I’ve been at Casa de la Luz four years, and anticipate staying as long as they’ll have me.

I was an active partner in a Bay Area record store for three and half years. I’m a music enthusiast and a record collector, which in some sense is building an archive. That’s aligned with part of how I think of hospice: as building an archive of this time, the end of one’s life. The way things conclude is just as important as anything that came before. I care very much about approaching it with some degree of deliberation, and thinking about how best everyone can be experiencing this.

Normally I see patients one or two times a week, but because of the pandemic Medicare has permitted us to go longer between our supervisory visits, since facilities are limiting visits. My understanding is the reasons are twofold: to conserve PPE for when it might be really needed, but also to minimize risk, because whenever we go into a home there is always the risk of exposure, no matter how careful everyone is. All of this is in preparation for the possibility of more and more people with the active illness.

I primarily see patients at their home, but I do have some patients in facilities. Now we are masked with every patient and family we see. Coughing, shortness of breath, and fever may very well be symptoms associated with the end of life or a patient’s disease, but at this time we need to be cautious.

Just having my face covered is huge—huge. I try to make up for it because I want to minimize the distance I feel from people, but having a mask on, at least in the work that we do, which ordinarily we’re not masked for, is challenging. I have to make sure I am speaking loudly enough, clearly enough, often to people who don’t hear or understand as well as they once did, or they might rely on lip-reading to some degree, so the mask definitely adds a layer of difficulty. But it’s always about connecting, and I do my best to connect, regardless of what I have to wear.

Because of quarantines I have a patient that I see from outside of her building: we communicate through the front window. She’s primarily Spanish-speaking, so I write her notes in Spanish, hoping she can understand. She has some dementia. Sometimes she’s able to read and answer me; I can’t hear, and she can’t hear me, so we are doing the best we can in the circumstances. I don’t know to what extent her family has been able to visit, and so seeing me provides some contact. She smiles, which I take as a good thing. Hopefully it’s a pleasant way for her spend a little bit of time.

Hospice care is different now insofar as patients’ loved ones are either restricted from visiting them because the care facilities are limiting visits, or their family is out of town and are not traveling. Maybe they aren’t allowed in the country. There are all kinds of ways in which people are far away. So we nurses need to be the eyes on the ground for the family, and be supportive to the patient in the absence of visits from their family and other loved ones. We need to report back to the family to give them an accurate picture, to acknowledge how difficult it is to be away, to assure them that their loved one is comfortable. Even if a family is able to have FaceTime or Zoom, it’s still at a remove. We want to be able to connect patients with their loved ones as best as possible, which is seriously challenged by quarantine restrictions.

Whenever people are having a tough time, we acknowledge it: this time is especially hard, and even more so because of COVID-19. Because people are more isolated at a difficult time, we want to to offer as much support as we can. We might be visiting less frequently, but we compensate for that by being more in touch in other ways: picking up the phone, asking how things are going.

The common element for hospice nurses is find finding out what people need; sometimes they can say and sometimes they can’t. First we want to manage whatever symptoms a patient is are having: pain, shortness of breath, anxiety, agitation, nausea, vomiting, constipation, etc. We take care of the basics and then leave the rest to the families, to try and have the kind of experience that they believe their loved one would want. If a person is still able to determine that for themselves, we place a big emphasis on personal autonomy. But a lot of times people are no longer capable of making their own decisions and so we try to read what it is they might want, or understand how they spoke of it previously.

Culturally the thing I come in most contact with are people’s religious beliefs: People will talk in a certain way about what is happening and what’s going to happen. Faith can play an increasingly larger role as people approach end of life, and be a solace to them. It’s not that I don’t have my own views about those things; I might bring those in if it might be helpful to look at something a little bit differently. But I feel best affirming people in their beliefs and adopting their language and sustaining that for them.

Many people are coming to this time unprepared. Our culture keeps death behind closed doors and at arm’s length, so a lot of what hospice nurses do is education about what happens, learning what it looks like to watch someone die, what the expected stages are. Each and every death is singular, but there are commonalities.

We aren’t born knowing how to do this, it’s a cultural thing: you have to learn it. The way to learn how to do it is being exposed to other people doing it. You see it up close, you see how other people respond. If you see this and you understand what is going on, you will be helpful to others. I say to people, You are learning how this happens and it will be useful to you in other ways, because there will be other people in your life who will be dying and you will know a thing or two. And hopefully that will make things easier for them.

To varying degrees our lives are apprenticeships to grief. We tend to think of grief as a feeling that will pass, but how could you get over it, why would you want to? Grief both deepens your capacity for joy, and helps you understand what the stakes are: life is finite. We grieve things we wish could be otherwise. Death is a thing we wish could be otherwise, but it’s not, and that’s why grief is an appropriate reaction.

Obviously people reach this time with things that are un-mended. There is plenty of family conflict and broken-heartedness that you hoped this time would open up and present an opportunity for mending. Sometimes that does happen. A lot of times it doesn’t.

All of our interactions with people lead up to this end time: this is the time we have. You know that every loved one is going to die. What could that feeling of broken-heartedness do in the present moment? How can that inform you?

We often hear the language, “Things are going badly.” And yes, by objective measures they are going badly, because a person’s life is ending, it’s nothing they might ever want. But at the same time we also try to see the bigger picture of their life, and we know all of our lives conclude in similar ways. We want that to be the best experience it can be in the circumstance.

The end of life would benefit from a lot of things, but especially more music and animals. When it’s appropriate, I sing with my patients. I just went to the memorial service of a patient that I sang with. We sang “September Song,” and Duke Ellington’s “Don’t Get Around Much Anymore.” She knew the words better than me, for sure!

In care homes families no longer provide the hands-on care, but in home hospice family members are changing briefs, emptying catheter bags, feeding and bathing patients.
I acknowledge their difficult time—of course it’s a difficult time—and try and suggest ways to think about it a little bit differently in order to make it not necessarily easier, but more bearable. That’s hard to do, because a lot times the spouse is the sole caregiver. They are up at night, they aren’t sleeping well, their loved one is dying, and if a patient has dementia, they are becoming children again, and that’s especially hard when you are looking at the person you fell in love with and married.

A lot of people have left more clinical aspects of nursing, or doctoring, or social work, in order to work in hospice. There is a kinship or solidarity, that we are doing this together, providing hospice care. Day in and day out we have patients that are dying, and even if we just met them, we are still quite attached. There’s a social work aspect, a therapeutic aspect, a pastoral aspect, and that’s what draws me to this work. We have limited staff in the office because of COVID-19 restrictions, but it is not at all a somber place: people are friendly and kind and joyful and funny. It’s a livelihood, and a business, but there is a shared commitment to the mission of ensuring that our patients die with dignity and in comfort.

At the end of life I definitely want clients to be comfortable. I don’t want them to be in distress. I want them to know they will missed. I’d like for my patients to be able to say the things that they want to say to the people they want to say them to. I want them to feel that they are being heard and that I am trying to help. Opportunities may be constrained, because of COVID-19, but there might be new ways to be helpful.

Recently I happened to be with a patient the day her iPad arrived. I’d never set up an iPad, but over a few hours we got it up and running, we figured out passwords, we got Zoom running, and lo and behold, there was her daughter in Canada. And that was beautiful.

Cover photo by Mick Haupt

This interview was made possible, in part, through the Arizona End of Life Care Partnership, a growing network of organizations and individuals committed to ensuring quality of life at every stage through education, support, sound policy and choices. Since 2014, the Southwest Folklife Alliance’s End of Life: Continuum program has produced events, gatherings, films, and publications honoring the many traditions and practices related to end-of-life, grief, mourning and death in Southern Arizona’s folk, ethnic, occupational, faith-based and alternative communities.