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Posts Tagged ‘dignity’

Last weekend I had the privilege of accompanying my aunt on the final days of her life. Long burdened with Alzheimer’s disease,  Aunt Ruth turned 94 on Friday, accompanied by a staff member who had stayed late Thursday night so she could be the first to wish her a happy birthday. On Saturday night at 11 p.m. she took her last breath, with another staff member by her side.

One of the longest residents of Fenelon Court, the long term care residence where she spent the final years of her life, Ruth was loved by the staff, who called her Ruthie, her childhood name I had only heard in family stories. She was the youngest of my father’s five siblings and the last to leave. She was spunky, spirited, outspoken, generous, and loving.

When we arrived from Ottawa on Friday, she was somnolent, no longer responding to visitors or staff. I had brought my ukulele with me on the trip, and knowing that hearing is the last sense to leave, I set myself up by her bedside and began to play. Whether she could hear me I’ll never know, but I like to think that the music of Leonard Cohen (Hallelujah) and the gentle words of The Water is Wide provided her with comfort on her journey.

As I played, staff came in and out of the room to check on Ruth, and to offer drinks or food to me. Each time they entered, I was struck by their gentle caring and familiarity with “Ruthie.”

“She’ll do it in her own time,” one nurse commented. “You always have, haven’t you Ruthie.”

On Saturday we spent much of the day with Ruth, giving my eldest sister a much-needed respite from the long days she had been spending by her side. Once again, I sang, shared birthday cards and stories with Ruth, reminders of the love that surrounded her. When we finally went back to our hotel at 9, one of the nurses reassured us that she would sit with Ruth. She remained at her side until she died.

The next morning we returned with my sister Judy to begin cleaning our Ruth’s room. Ruth’s body was still there, and I was glad for my years of hospice volunteering that helped it seemed perfectly natural. As I remarked on the volume of clothes in her closet, I couldn’t help but notice their beautiful condition – another tribute to the careful attention of the staff.

As we prepared to walk out with the people from the funeral home, a staff member lay a quilt over her body, and as we walked slowly to the front door, staff members throughout the building lined the halls, a gesture of respect I recognized from my own hospice.

Though I am writing this post to honour Aunt Ruth, I am also honouring the amazing staff at Fenelon Court. When I knew she was in a long term care facility, I had an image of hallways filled with patients sleeping slumped over in wheelchairs, a certain smell permeating the building. I had witnessed these scenes in other long term care facilities, and I was dreading seeing my aunt in such a place.

Fenelon Court could not have been farther from those expectations! The building is bright and clean, the patients engaged in activities where possible, and attended to with care in every encounter I witness. “We are their family,” one nurse told me. “Often they have a son or daughter who rarely visits. We are here every day and we love them. They’re our family too.”

Perhaps it’s because the facility has only 67 residents – and it is designed in pods so each area is relatively small and contained. Perhaps it’s because it is located opposite an elementary school and children often visit the centre, sharing drawings, Easter activities, and joy with the residents. Perhaps it’s because it’s located in a small town, a place where community really matters. But I think there’s something more – something I can’t quite put into words – beyond respect, dignity, caring, and love. That’s what I experienced with my aunt last weekend. And for that I am enormously grateful.

Fenelon Court

fenelon_overview

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Sharon
On Monday morning I walked into Room 4 to meet our newest resident. Unlike most patients, Sharon had been admitted on a temporary basis to stabilize her medications and give her husband a break from the daily care-giving he had been doing for eight months.

“How are you doing?” I asked when I reached the side of her bed. “I hear you’re going home tomorrow.”
“Yes, I’m really excited about it. But I have to have a bowel movement first. I haven’t had a bowel movement in four days, so they’re going to give me a suppository. I really hate this.”
“I bet you do,” I said, remembering my sister’s struggles with constipation. “They feel really horrible, don’t they?”
“Yes,” she said, adding quietly, “My husband thinks this is yucky.”
“This?” I asked, searching for her meaning. “You mean, ‘bowel movements’?”
“Yes. He hates them.”
“Lots of people do,” I said, remembering how uncomfortable I was with my mother after her aneurysm. “But the funny thing is, we all have bowel movements. It’s just that until we get sick or disabled, we do it in private. And for sure, we don’t talk about it.”
She looked at me with a blend of relief and disbelief. A stranger was standing at the side of her hospital bed, not a nurse or a doctor, just a volunteer, talking in a matter of fact manner about bowel movements.
“It’s crazy isn’t it,” I continued. “You have to take meds for the pain. The meds cause constipation. Constipation causes pain. Sometimes worse pain. You have to take something for the constipation. Which in turn causes more pain.”
I reviewed the alternatives in my mind: laxatives (milk of magnesia, exlax), stool softeners (colace, laculose), suppositories, fleet enemas, fecal extraction. A continuum of intervention. Whatever the method, eventually there is relief. But first there are more decisions to be made. Location. Method. Washroom unassisted. Washroom with walker. Washroom with assistance. Commode at the bedside. Two-person assist to the commode. Bed pan. Catheter. Diaper. So much of life at the end is focussed on bowl movements.
When I told the nurse that Sharon felt like she had to go to the bathroom, she said: “She has a diaper. Just tell her to go. She doesn’t have to worry.”
“It’s funny,” I mused.”Our mothers spend years toilet training us, instilling in us a horror of accidents, and now we tell our patients, ‘you don’t have to worry. Just go.’ It goes against everything we’ve been taught.”
“In some ways, it must be a relief,” she suggested. “You know, to just let it go.”
“I don’t think so,” I said, knowing it would be no relief for me to have my private bodily functions made public – the smell, the mess, the anticipated disgust of others.
When I teach a unit on death to my first year class, my students are horrified at the loss of dignity. Tubes. Bedpans. Diapers. “If I get like that, just kill me,” one of them says, and they all nod in agreement, laughing nervously. I tell them, “there is dignity even in the midst of death. We create the dignity. We carve it out in the face of profound indignity.” They stare at me in disbelief.
Sharon and I were both mothers. We had changed thousands of diapers, rarely feeling disgust. For us, these were acts of love. Small acts of love and necessity.
“One of the things you find when you’re caring for someone who is dying,” I said, “is that you can do things you never thought were possible.”
“How do you mean?”
“I never would have thought I could have cleaned up my sister’s vomit day after day. But I learned to do it. I got to the point where I didn’t even mind.”
“I don’t think my husband will ever get to that point,” she said.
“Maybe he won’t,” I admitted. “But maybe you can get someone to help you at home.”
“He doesn’t want any help,” she told me. “He wants to do it all himself.”
The nurse arrived with a suppository. “That’s something I never learned to do,” I confessed. “I was always afraid to push it too far, so it kept popping out.”
Sharon laughed at my admission of incompetence. “So I leave it to the professionals,” I joked with the nurse. “We all have our skill sets, and suppositories don’t appear to be in mine.”
“You never know,” the nurse encouraged.
“I’m pretty sure on this one. It doesn’t worry me too much. I have lots of other skills.”
Like standing at a bedside, talking matter-of-factly as the suppository begins its work.
After a few minutes, Sharon told me she was ready.
“You have to wait a little longer. I know it hurts,” I said.
I remembered my sister begging me to let her get up on the commode. “I have to go NOW.”
“Wait a little longer,” I would tell her. “Just a little longer.”
“I can’t,” she would scream at me. “You don’t have any idea how horrible this feels. I can’t wait any longer.”
“Just a little longer,” I urged Sharon. “I’ll talk to you while you wait. It’ll make the time go by.”
And so we talked about her family, two boys and a girl, smiling in the 12 by 16 framed photograph on the dresser. Sharon had long blonde hair in those days, a salon cut, a beautiful smile. Before chemo. Before radiation. Before she came to the hospice.
“It hurts,” she said finally, returning to the reason I was standing here.
“Just a little longer,” I urged. “It’s only been twenty minutes. Let’s try for half an hour. It’ll be more effective that way.” “Let’s.” I caught myself. As if I had a suppository stuck up my rectum too.
“I can’t wait,” she said. “It hurts SO much.”
“Think of it as labour,” I said. “Remember when you got to that point where you absolutely had to push or you were sure you’d explode? And the doctor told you that you couldn’t push yet?” She smiled.
“Think of it as transition,” I continued. “And you have to wait before you push. Just breathe into it.” I breathed slowly. “Remember how to do your breathing? I bet you took childbirth classes, didn’t you?” She nodded. “So did I. Fat lot of good it did me. I had 48 hours of labour followed by an emergency C section. But I did make it to transition. And pushing.”
My stories distracted her.
We talked a little longer. Then she said, “I can’t wait any more. Has it been half an hour?”
“Yup,” I said.“You can go ahead and push.”
“You can go take care of someone else for a bit,” she said, meaning, “I want to be alone.”
Every five minutes, I poked my head into her room. “You OK?”
“Yes, Katherine. I’m OK.”
“You finished? Do you need the nurse?”
“Yes,” she said finally. “I’m ready.”
And so together the nurse and I bathed Sharon. She was a heavy woman, bloated by cancer and the steroids she’d been taking to reduce the swelling from the brain tumour. We turned her gently onto her side.
“Roll over towards Katherine,” the nurse instructed. “And hold on tight.”

(Note: Names and other distinguishing details have been changed to anonymize the patient.)

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I’ve been thinking (and writing) a lot about dignity in the past couple of weeks – what it means and how the notion of dignity has been largely appropriated by the “right to die” movement. Organizations with names like “Dying with Dignity” and “Compassion and Choices” seem to suggest that the only dignified way to die is with the assistance of a physician (whether through lethal injection or the provision of a lethal dose of medication).

Yet, dignity and compassion have been core values of the hospice movement since Cicely Saunders opened the first modern hospice in 1967 and remain central to our work in hospice palliative care today. Compassion lies at the heart of how we deal with patients and their families. And the preservation of a patient’s dignity, integrity, and respect are central to how we care for each person who enters the hospice program, whether in their home, through day hospice, or in the residence.

In a time when the terrain (legal and in public debate) is rapidly shifting on these issues, how can we make our voices heard? How can we move beyond polarized debate into a space where human suffering and the relief of suffering are paramount?

I believe that fear (of dying, of losing control, or the unknown) and ignorance lie at the base of the increased support for assisted suicide, and that the limited availability of hospice palliative care fuels that support.

I believe that hospice volunteers and others involved in hospice palliative care can help to relieve much of the ignorance around hospice care. We can talk about what hospice is (and isn’t). We can dispel the myths about hospice by telling people about what we really do. I know that after many years of extolling the virtues of hospice care (in discussions that mostly end with the person saying, “I could never do what you do. You must be a saint!), I’ve held back lest people think that I’m either preachy or crazy.

But I think it’s time for us to speak out – to talk to our friends, our acquaintances, the members of our communities. Not in a way that exacerbates division, but in a way that illuminates what dignity and compassion can mean.

I’d love to hear from readers about their views on this. Given the Supreme Court Decision (and the ticking clock!) there’s an urgency to these issues. So, let’s speak out! Let’s talk…

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