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Hospice and the Peaceful Home Death
by Kate Steger
Home deaths, like home births, have gone out of fashion. Like a Norman Rockwell painting from another century, the tableau of an aged parent propped up on pillows on a four-post bed surrounded by loving family members of all ages can be imagined but rarely matches reality. Yet this was the kind of death my great-grandfather had in 1965 and, after sharing the experience, the kind of death my mother envisioned for herself.
We don't really have much say in how and when we go. Certainly my mother wasn't happy when she was diagnosed with Stage IV breast cancer. On the other hand, she had more choices than many do in arranging her departure. In spite of the uncertainties of her illness, she hoped to be surrounded by her loved ones and hear the bustling sounds of life going on around her as she breathed her last.
As her family, executing her wishes was our last chance to repay her for everything she'd done for us over the years. We were more than willing, but none of us had the training or expertise that we needed to ensure the level of medical care she needed to receive as she declined. Fortunately, we had the support of Catholic Charities Hospice in Leavenworth, Kansas, where my parents lived. Without their support, fulfilling my mother's wishes would have been much more difficult if not impossible.
In the third year after her diagnosis, after chemotherapy and radiation had done their utmost, Mom developed a cough and had trouble breathing. She had emergency lung surgery to remove fluid that had built up in her pleural sacs. Seeing metastasized cancer everywhere during the procedure, the surgeon subsequently announced that she had no more than two weeks to live. Immediately, the hospital's palliative care team surrounded our family and began to provide the information and services we needed to discharge Mom from the hospital and get her comfortable in her own home.
They helped us access the equipment we needed--a hospital bed, oxygen tanks, toilet and bath aids, etc.--and the full range of healthcare professionals from nursing aides to social workers and spiritual pastors. Most importantly, they were our bridge to the Catholic Charities Hospice team that eventually became so significant to us.
But as it turned out, it was a bit of "over-kill." Death can be an unpredictable jokester too. Little by little, and against all predictions, my mother recovered. She got out of her hospital bed and rejoined the routine of her familiar home. Eventually, she wanted to sleep in her own bed with my dad again and hospice sent someone to take the bed away. She even went off oxygen and after four or five months of steady improvement, the hospice nurse decided to Mom was too healthy for hospice care. "Hooray!" we all cheered.
This yo-yo effect is also apparently part of the process. Our hospice nurse, Andrea Clark, knew what we were going through. Without judging us, she entered into our lives at a moment of extreme emotion and uncertainty. She was a calming and gentle influence when we were at the mercy of radically unpredictable passions. She allowed us to laugh and cry and sometimes even bubble over with rage. We were truly unwilling to see her go. Mom especially had formed a relationship with Andrea that she didn't have with anyone else. She trusted Andrea and was willing to entrust Andrea with her care as she left this life. So Mom didn't go off hospice without a tiny twinge of regret.
Over the next two years, Andrea periodically checked in with Mom and when the inevitable real end approached, hospice was flexible enough to put Mom back on Andrea's caseload. By then, as a family, we'd had time to adjust a little more to the prospect of letting Mom go. Thanks to the hospice help we'd received on the first round, we were now old pros.
The hospice social worker had helped Mom figure out the benefits of a long-term care insurance policy that she'd paid into for years so that she could hire in-home care including a dear friend of hers who came regularly to cook and do grocery shopping. It was much better to have a familiar friend help my parents keep the refrigerator clean and full than turn that essential task over to a stranger.
In addition, the hospice staff had helped us set up a medicine tracking system and other daily care routines so that even with the chaotic comings and goings of family and friends, the medical essentials, especially pain management, were never forgotten. Although Mom had a very supportive faith community of her own, the hospice pastoral staff had also offered funeral and estate planning as well as family grief counseling that would've been invaluable had we not already had this kind of support.
So when we came down to the last few months of my mom's life, there actually was a peaceful aura in the house. Mom's care was attended to smoothly without interfering with the steady stream of visitors and the active social life my parents continued to engage in. Their house continued to be a magnet for love, laughter and life. What more could we ask for?
And yet there was more. There was the death itself. At this stage, Andrea helped us in two critical ways. First, she helped us see the signs of death as they approached. Unlike the surgeon, who had made a mistaken prediction two years before, Andrea didn't prognosticate. She just helped us notice changes which then helped us make decisions…like when to increase pain medication, when to bring the hospital bed back , and most importantly, when to let friends and family know to say final goodbyes.
Like most modern families, my immediate family is spread out across the country and even the globe. Final visits can be excruciating and no one wants to do it too soon or too late, but they must also accommodate mundane flight and work schedules. Asking for an emergency leave-of-absence may not sit well with employers if you cry wolf more than once. Andrea never told us what to do, but she gave us enough information to make timely decisions.
Secondly, Andrea gave us confidence and reassurance very much like a midwife coaches new parents. She held our hand, so to speak, as we prepared for and endured the last day. It eventually came and though none of us really believed it when it arrived, Andrea knew. After her morning visit, she said, "I think it might happen today." With other patients to visit, she promised to come back on her lunch break.
The morning was peaceful and beautiful. At Mom's request, the hospital bed had been set up in the living room where she could come and go from the conversation around her without effort. Until her last night, she'd still been sleeping in her bedroom with my dad. She never woke up that morning, but breathed her last in the heart of her home with the hummingbirds and butterflies fluttering in front of the big picture windows in front of her. One of my brothers was sitting next to her, but the rest of us were quietly attending to the tasks of daily life. When he noticed a change in her breathing, he called to us and then she was gone. Andrea found us when she returned gathered around her bed in the living room.
The thunder-cloud of our grief had already poured itself out and while showers came and went for the rest of the day, we were ready for the next step. Without Andrea's presence, our final care of our mother would never have been possible. Mom had decided she wanted a natural burial without the chemical pollution of embalming, so instead of immediately calling in the undertakers, which we'd done after the deaths of both of my grandmothers, we began to prepare the body for burial ourselves.
Once a common necessity, this practice has been virtually forgotten and none of us really knew what to do. Andrea talked us through it. We said a prayer; my dad, overwhelmed, excused himself; my brother washed her face and her arms then left the room too; my sister and I bathed the rest of her body. All of this was okay with Andrea. "You're doing it right," she assured us.
We had trouble getting her eyes to stay closed and Andrea suggested we massage the face a little. Gradually, with our tender touch, the pall of death left her face and took on a look of peace and even happiness. When we were almost finished dressing her, some of her friends arrived. One of them styled her hair and another added a touch of make-up. When my dad returned to the room, he was so grateful to see her this way and was able to sit with her body and touch her hands one last time.
Friends came and went, we prepared and ate one last dinner with an empty place set for her, then we sat with her and watched the sunset until the darkness fell around us. When the undertakers came about eight in the evening, we moved her to their gurney ourselves and sang one of her favorite hymns as we escorted her to the hearse. The funeral home staff was very respectful of our wishes.
After fighting breast cancer for five years, Mom wanted to model for her family the peaceful death that she'd witnessed when her grandfather died. She wanted us to know that death was a natural part of life and not an alien, antiseptic, hostile event that had no place in the family home. With help from hospice, Mom was able to give us this final, precious lesson on living well all the way up to the end.
About Kate Steger, MA, MPH
Kate Steger works in global and domestic public health. She's interested in the intersection between medicine and the humanities and is committed to empowering individuals and communities by helping them harness the power of the media for self-expression and social change. She's currently promoting her brother's documentary film, Stage Four: A Love Story which was shot during the last five years of their mother's life. Focusing on their parents' relationship, the film furthers the lessons referred to in this article, that a cancer diagnosis isn't a death sentence but a call to live life to the fullest. The film is due out in Fall, 2014. To learn more about how you can see the film, visit the Stage Four: A Love Story campaign.
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