Hospice Care: An Inspiring Story Of Love & Dedication
It has been one of those weeks.
We’ve all been there.
You know it feels. Nothing seems to go right. Minor things feel like major problems.
For me, this week has been one thing after another.
I feel lost and uncertain. I’m worried about money. I keep saying the wrong things. I feel fat and tired. I broke a nail. My hair looks like crap. I even have a giant monster zit on my chin that won’t go away.
I wallowed in this misery, periodically feeling sorry for myself over the last few days.
But something happened, and I feel very blessed that it found its way to me. I needed it to remind me what a waste of time all of this is, worrying about the really small things.
I read this very beautiful article in Ladies’ Home Journal. I plan to keep it forever and turn to it whenever I am in desperate need of the right perspective (and I know I will need it badly from time to time). It inspires me to be grateful. It reminds me to love. And most important it compels me to make a difference.
Please read it. You will be forever changed.
It Doesn’t Have to Be Sad: The Life of a Hospice Nurse
By Diana K. Sugg
Outside, it’s noisy on this busy block of row houses in Baltimore. But inside one tidy living room, all is quiet except for the sound of a woman’s raspy breathing. The patient is huddled in an easy chair under a handmade pink-and-blue afghan, a knit cap on her head and booties on her feet. She has trouble staying warm these days. Her cancer has returned with a vengeance and she has only a few weeks to live. Hospice nurse Jill Campbell kneels down beside her patient, listens to her breathing, and then checks her blood pressure. Campbell has already hauled in oxygen tanks, showed family members how to work them, organized the medicine, and assessed how her patient has been eating and sleeping.
But now is a moment to connect one-on-one. Campbell wraps her hands around the woman’s hands and rubs them together to warm them. She looks into her face. “Are you feeling a little better?” she asks softly.
Getting to know her patients and helping them through the toughest time of their lives is what Campbell, 43, appreciates most about being a hospice nurse. “I don’t know of another position where you can do more for people,” she says.
Her patients have all been told that they have six months or less to live. Rather than continue with often-difficult or painful treatments that probably won’t extend their lives, they have decided to stop trying for a cure. Instead, with the help of hospice care, they’ll focus on comfort and on living whatever they have left of their lives to the fullest — usually in their own home.
Being able to die at home is a major part of the appeal of hospice, but patients and family members may not see it that way at first. “A lot of people still view hospice as giving up and letting the disease win,” says Campbell. That’s why the decision to call in hospice care can be an incredibly difficult one for a family to make. Once they do, though, most patients and their families soon understand the value of having a team of dedicated professionals — including social workers, health aides, chaplains, and nurses — work together to provide not only physical but also emotional and spiritual support. When Campbell took the job at Gilchrist Hospice Care three years ago, she had the same fears as anyone about hospice. As a mother of three and a veteran nurse who’d worked in operating rooms, she expected it to be unbearably sad. But on her first home visit, she was surprised that the family members were relaxed and sharing funny stories about their dying father. “There’s still happiness in the sadness of it,” she says.
By spending time inside patients’ homes, Campbell has witnessed the blessings of a peaceful ending to life. She’s seen family members resolve longstanding, hurtful disputes and be reunited. For some patients the victories have been smaller but equally profound: a visit to a hair salon or being able to sit outside on a nice day. But getting patients and their relatives to that place of peace and acceptance can be tough. Some families are divided or resistant to the idea of hospice. One family asked Campbell to cover her badge, thinking that if their grandmother saw the word hospice she’d give up and die.
Others, unnecessarily worried about drug addiction, won’t give their sick relative pain medicine when it’s needed. And some patients are afraid of taking morphine, thinking it will stop their breathing or make them feel out of it. “Did you take the medicine?” Campbell asks a cancer patient, who is holding her rib cage in agony. Campbell squats beside the hesitant woman and assures her she’ll stay with her while she takes it, to make sure she’s okay. The patient is worried she’ll just sleep away the time she has left, but pain medicine often allows a person to feel better and actually do more.
Many days Campbell is busy juggling crises — one patient has fallen down, another is vomiting, and another is close to dying. Other days she delicately navigates the fears of patients and families with her gentle, grounded spirit. In home after home she finds that people want to know the same things: how long they have left and what the final moments will be like. Some only want to know if she can keep them calm and out of pain. She can. Others want details, so she’ll explain that after they stop eating and drinking, for example, they will become semicomatose and just gradually slip away.
Some still wonder if they could be the rare person who survives. “Has there ever been a case where somebody walks away from this?” one 75-year-old grandfather asks her hopefully. “I don’t know,” Campbell says after a moment. She explains that it’s hard to say with his kidney disease. “Live each day,” she tells him. Then, noting his jokes about eating whatever he wants and having his daughter and wife wait on him, she adds with a smile, “And obviously you are.”
Because many people see hospice care as the end of hope, there are even some doctors who are reluctant to bring up the option. As a result, more than a third of hospice patients don’t start palliative care until they have just days left to live. Ironically, some patients who get hospice care live longer than those who don’t, studies show. But many wait until it’s nearly too late, and those people often sacrifice the chance for closure.
One day Campbell gets a message: The man she’d just seen for the first time two hours earlier has already died. “Ooh,” she says, letting out a long, frustrated sigh. She knows what she could have done for him if she’d had more time — the same thing she wants for herself when her life is ending: a chance to have those last conversations, to be comfortable, at home, surrounded by loved ones.
That’s why she tries to focus on what patients want. And when a terminally ill person hangs on longer than seems possible, Campbell has learned that the patient is often waiting for something to be resolved. In one case a dying woman’s adult children are gathered at her bedside. One of the daughters, in particular, is heartbroken and distraught. The chaplain leads them in prayer and then the children, leaning on each other, leave the room. “Look, they’re together,” Campbell whispers to the woman, sensing she is worried about them. “If you want, it’s okay to go. They’re going to be okay.” Within minutes, the woman dies.
“People are so afraid of how it’s going to end,” Campbell says. “But when you’ve been there and held their hand and watched them take their last breath, you see that it’s a really powerful moment — powerful and peaceful.”
For more information on this story and a very moving and worthwhile photo essay on Jill Campbell and her work, please visit:http://www.lhj.com/community/your-stories/hospice-nurse-photo-essay/?page=1