Practice Notes: Nursing Home Residents & EOL Doula Care
I will always remember the first time I was asked to visit a skilled nursing facility to provide doula care for a resident. Talia was still lively but fading, and mostly untroubled beyond kvetching over the usual complaints of nursing home patients, every one was always rushing her and the food sucked. Her daughter visited a few times a week but wondered how her mom might benefit from a different weekly visitor. Would she be more inclined to voice her personal needs and wishes to someone she had less concern about burdening? Would a fresh face, a gentle hand massage, and a person who has not already heard all of her stories offer some needed social stimulation? Because, as we should be reminded often, until last breath we are engaged in the labors of living.
Let's face it, visiting a nursing home is hard even when it is not your own person in residence. It is the place most folks hope and pray never to end up. Walking through the door triggers an internal recoil even before the air hits your senses. Memories of other visits to skilled nursing facilities rush in with all sorts of complicated feelings in tow. Before I leave my car to enter a skilled nursing facility I take a moment to ground myself, because it helps to remember that it's ok not to be ok.
I waded through all of that, signed in at the reception desk, and found Talia's room. Her daughter had let her know I'd be by and she welcomed me with good cheer. She knew that my visit was a gift and an experiment, I was a person who would come every week for an hour or two, depending on her wishes.
“Hi Talia, I'm Dina. Ellen says she mentioned I'd be coming to visit.”
Talia was sitting in her chair, she was a tiny lady with a barely tamed mane of salt and pepper curls. Her hands shook as she pushed her glasses up from her nose and looked me over. She pointed to a chair across the room and said, “Pull that over so we can sit and get to know each other a little.” I moved the chair close so we'd be knee to knee, her daughter had alerted me that she'd been hard of hearing since her 50's and had an easier time if she could also read your lips. Then I asked the first question, “How's it going Talia?”
And so began a conversation that brought comfort in the last few weeks of Talia's life. Because I was not her family member and did not work for or live in the facility, our visits gave her time to just be. While we visited Talia did not need to behave herself to be well cared for or heard. Because I was not responsible for her nutrition we could laugh about how much she hated the thickening agent that the aides and her daughter put in her liquids. She could talk about her sense that she'd be dying soon without my offering any reassurance otherwise.
In end-of-life work we learn to recognize the fatigue terminally ill people contend with from having to manage many relationships with different carers in order to get their needs adequately met. Whether a dying person is receiving family care at home, in a residential hospice, a skilled nursing facility, or a regular hospital room, if they are conscious they are working on getting their needs met. A person in the bed who apologizes for needing your help in the first place is trying to make sure you will come back when they need it the next time, even if all they can manage to communicate with is a friendly wave of their hand. Most of the carers tending to the needs of a dying person in the last weeks of life approach with tasks, purposes, and body chores, and the agenda implied by that impossible to answer question, “are you ok?”.
What can an end-of-life doula offer in this situation that is different? Time! When I enter the room in a nursing home, unlike all the staff, no one else is waiting for me in the next room. The person who lives in that space can have my undivided attention. I can adjust pillows, give a hand or foot massage, fetch an eyebrow pencil from a purse. I can write postcards to grandchildren for them to sign. I can read the sports page or jot down a recipe they wanted to remember for that nurse who'd asked but had no time. Unlike a family member I do not need to be reassured that they are ok, and because we have no personal history there are no touchy subjects to avoid. That funny dream about an old taboo crush is safe with me.
And there is time for questions like, “What will dying feel like?” or “Is it ok that I don't know how to say goodbye?” Or a conversation like the one I had with Talia a few days before she died, that began with her taking my hand, “I wish I had more privacy for dying, for the first time in my life floating off on an iceberg seems like a good way to go.”
Another role for an end-of-life doula in caring for nursing home residents and their families is to be a person to call after last breath. In most circumstances, nursing home staff are caring and helpful to families they have notified of a death, or when they've kindly supported a family who has stayed close by. But they also have many other residents to care for and if a family needs time and attention this can present challenges. Anticipating this I had arranged with a client to call me after her father's last breath so that I could support their sometimes fractious combination of personalities in the immediate quiet after Pop died. Their specific concern for support was the time between calling the funeral home and his body being collected when saying goodbye would become so final, and just after because the nursing home expected them to immediately clear Pop's belongings from the room.
What can an end-of-life doula bring to this nursing home moment? Calm. First, it was ok for them to call me at 5am and ask me to come right away. Unlike facility staff, I did not have other residents ringing morning bells. I could arrive in a room where death had settled and be of use. I had visited twice with Pop in the prior weeks and knew that his expressed curiosity for life and death would help his surviving family navigate the messes he left behind. I could help them wash him and comb his hair (with the swoosh he'd wanted) before being removed. I could listen to the tender sounds his people made as they leaned into these last blessings for him. I could be someone to hold onto tight when sorrow was overwhelming. And I could witness for them these first gestures of letting go.
Perhaps of most importance, I could inform them of what would happen when the funeral home attendants arrived so that a body bag would not be alarming. They removed his rings and kissed his hands. I helped them select things to send along with the body, things they wanted him cremated with. They chose feathers he had collected on walks in the woods and tucked them in his shirt pocket with love notes. I helped them express specific wishes to the attendants as the body was removed and then let the goodwill of my presence absorb tensions while Pop's room was cleared. A family that feels genuinely seen and supported, in what is truly an hour of need, is more able to let their better selves rise to the occasion.
My last example of how an end-of-life doula can provide relevant support for residents of assisted living and skilled nursing facilities involves a client, Doc, who hired me himself months before a sudden decline. We had been working on advance directives and I'd sent him to see his lawyer when his son came visiting. They had also toured local assisted living facilities and a residential hospice to gather information. Some weeks later, after we had worked on musical selections and an outline for his eventual celebration of life, he had a bad fall, perhaps a stroke, and precipitous cognitive decline. When I found out I went to see him in the hospital. His children lived out of state and, as happens with the elderly, many of his friends had fallen by the wayside. I continued to visit him there and thankfully overlapped visits with his one more involved friend who was able to let me know when he was being transferred to a skilled nursing facility. It was probably more clear to me than to any one else that Doc was not going to be released home to live independently again.
I continued to visit him at the nursing home and his friend notified the son-in-charge who contacted me to ask if he could pay me to visit with his father and report on his state of being. This arrangement continued for a number of weeks, during which Doc became increasingly agitated, confused and, for the first time since I had met him, paranoid. Finally, I came to visit one day and Doc had become one of the residents parked in his wheel chair between the elevator and the nurses station, where there was some stimulation and also watchful eyes. I kneeled in front of Doc's chair and warmed his cold hands in mine. His eyes came into focus and he recognized me, squeezing my hands harder he asked, “Are you the person I need to talk to to get sprung from this joint?”
Doc and I had been discussing his death plans for a few months by then and what was happening to him now had never been anticipated. He'd wanted to die at home in his tiny apartment with one or two friends attending. He had not planned for the eventuality of leaving home in an ambulance and never returning. None of the gracious goodbyes he had in mind, a last trip to the local waterfall, a last breakfast at his favorite cafe, were going to happen. But only I knew what that list of things were. Was I the person who could spring him from this joint? “I guess I am that person,” I said, “ I'll get on it.”
Because Doc's son had given the facility permission to discuss his father's health with me I was able to check in with the floor nurse and the occupational therapist, who both agreed that Doc could be evaluated for hospice. I told Doc I'd see him soon, called the residential hospice to see if there was a bed, and then texted Doc's local friend and his out-of-state son from my car. It was a Thursday, if we acted fast we could get him evaluated and moved by Saturday afternoon. And so it was.
I visited Doc in his quiet room at the residential hospice on a wintry Sunday morning. We listened to his favorite classical music on the cd player while he ate a peanut butter and jelly sandwich with a grape juice chaser. “They bring me cookies too!” he told me. For the first time in weeks he smiled freely, he was not withdrawn and fearful. He was very tired, weak, and would fade away over the next two weeks. Because Doc's family had means to provide supplemental doula care while he was in the nursing home, his timely release into residential hospice care (which they could also afford) quickly relieved his suffering. Instead of sitting in a wheelchair between the elevator and the nurses hub, his last weeks in hospice were peaceful and calm. He had one other visitor, the local friend. His son sent me family photos to look at together and through them Doc introduced me to his people. I read to him from a favorite book. I visited on what would be his last day and sang him home for a while, then got a call later in the evening that he'd let go.
In the preceding paragraphs you've read through three examples of relationships an end-of-life doula might develop to provide support to residents of nursing homes and to their families. These cases from my own practice represent both paid and pro-bono work. My intent in sharing these stories is to provide insight into how families and doulas can collaborate to fill gaps in the care that skilled nursing facilities offer. I want to be explicit about how I was compensated in each of these cases.
Talia's family paid me an hourly rate based on my sliding fee scale. I spent about seven hours with her over a three week duration. Time with Pop and his family was pro-bono (donated) and involved a similar time commitment. Time with Doc had three separate arrangements, over a number of months he paid an hourly rate for my time based on my sliding fee scale. In the week he was in the hospital and the first week in the nursing home I visited without pay because it was the right thing to do. Then his son asked to pay me the original hourly rate and arranged for me to speak openly with SNF staff, or I would have continued to see him pro bono but would not have been able to act as his care advocate.
I think it is evident but feel ethically obligated to state that these financial arrangements do not foster a reliable income stream, so doula beware. I hope this transparency is helpful, because being paid (or not) for what we do is as important as being able to describe what we do.
End-of-life doulas provide a non-medical, individualized, care alternative that is accessible for every nursing home resident where doulas are practicing. Just a few hours can go a long way towards relieving stress and suffering for residents and their families as death nears. Especially if the doula practice has made available a sliding fee scale, the care is affordable and the scope of service is comprehensive. In my experience end-of-life doula care is always a collaboration between the doula, the dying person, and their care-circle of family, friends, and providers. The doors of a nursing home should never be a barrier to good end-of-life care for the people we love. What kinds of support will make a difference for you? A doula can help.
photo at top: by Danie Franco @Unsplash
photo at bottom: by Dina Stander/2021