That’s why many choose some type of hospice care for their loved ones. Hospice and palliative focuses on making an individual’s last days as comfortable as possible, and in a homelike setting (if receiving services at home, though ideal, is not an option).
To get a behind-the-scenes look at palliative care, author Ann Richardson interviewed nurses, doctors, managers, clergy, and other staff members in two UK hospices. The result is her book Life in a Hospice: Reflections on Caring for the Dying (a free preview is available on the publisher’s website).
Here, she shares insights from the workers who dedicate their lives to helping the dying, along with ways that hospice care can make the end-of-life process more dignified and peaceful.
What Is Hospice Care?
First, it’s helpful to understand the nature of hospice care.
“Hospices were developed expressly to attend to the needs of dying people,” says Richardson. “They differ in their focus and arrangements, but at best they are like an extension of a person’s home – that is, as little like an ‘institution’ as possible.”
To accomplish this, many hospices encourage families to visit at any time, and some even allow overnight guests. In addition, meals can be prepared at varying times of day to accommodate patients’ individual needs and requests. This level of care is typically not available in a traditional hospital setting (except one that offers a palliative care program) because of its sheer size and scope.
“Hospice care is much more individualized, without patients being expected to follow set routines,” says Richardson.
The Dignity of Hospice Care
Based on her interviews with hospice care workers, Richardson was impressed with the sensitive and dignified care that hospices provided, responding to individual patient requests and staying alert to the needs of families during their loved one’s stay, at their death, and afterward.
“I was amazed at their thoughtfulness and sensitivity to all sorts of situations and requests,” she says.
That thoughtfulness was revealed by a hospice chef who believed that patients should take their meals in a separate dining area, rather than where they sleep. As he put it, “Patients take their medication in their bed, they poo and wee in their bed, and then you bring them nice food and say, ‘Here is your dinner!’ It’s important to get people away from their bed, away from the medical side.”
Hospice and palliative care workers are also sensitive to an individual’s desire to be treated normally, no matter what their prognosis.
“They don’t want to keep talking about cancer and dying,” said one health care assistant. “They often say, ‘It is so nice to have a laugh,’ because everybody who comes to visit them asks, ‘How are you? Have you got pain?’ They forget that they want to talk about the normal things.”
The Angels of Hospice Care
Hospice workers may not be superhuman, but their commitment to caring does seem otherworldly.
“I interviewed over 30 people and they invariably said they were not ‘special’ people, but just ordinary people caught up in the demands of this job,” says Richardson. “Nonetheless, they did seem like special people, inasmuch as they were willing to devote their waking lives to thinking about how best to respond to dying people and their needs.”
Clearly, hospice care workers don’t take end-of-life responsibilities lightly.
“You get one shot at this,” said one senior nurse. “They die once and you have to get it right. You can’t sit there and say ‘I’m sorry, I got that a bit wrong, can we do that again?’ What you do, these relatives will remember for the rest of their lives.”
One hospice counselor even considers it a privilege to be part of the process: “It is truly amazing to be involved in people’s lives when they are so vulnerable. People allow you in; they are very trusting, and that trust is quite humbling.”
Learn more about hospice care and end-of-life issues here.