For end-stage cancer patients, hospice can ease final transition
Despite advances in medicine, there is no absolute cure for cancer. Hospice care aims to help terminal patients maintain dignity and quality of life, and to help their families cope with grief.
Val Ireland, provider relations with Grace Hospice, said patients must meet two criteria to qualify for hospice care: they can no longer be pursuing aggressive or curative treatment, and their doctors must have determined they have six months or less to live. She said it can be difficult for patients and their families to accept that, and often they are in different places, emotionally.
However, Ireland said an interdisciplinary team of caregivers — typically including a registered nurse case manager, social worker, home health aide, volunteers and a chaplain, if the patient chooses — combine efforts to help patients and their loved ones as much as possible.
“The root of hospice care is really all about providing comfort and support and dignity; as much quality of life as we can assist people to have,” she said. “We don’t prolong, nor do we hasten death — we’re just about providing that comfort.”
Ireland said hospice care is on call around the clock every day of the year, but because caregivers generally aren’t in the patient’s home 24 hours a day, family members may fill roles that may be uncomfortable.
“Sometimes it’s difficult for families to assume that kind of caregiving role in very personal, physical care that’s required as people near the end of life,” she said. “So we provide a lot of education and support for that, and teach the family caregivers.”
Brenda Williams, director of patient access with Midland Care, said often cancer patients have more pain issues to deal with than average. Two physicians on staff there are board-certified in hospice and palliative care, and experts in pain management, she said.
“They have a lot of experience in that area, and they only work for Midland Care so they have a lot of time and attention to focus on their patients with us,” Williams said.
As treatment continues to evolve, patients with some types of end-stage cancer are seeing longer lifespans.
“Certainly some of the treatments today not only buy time but they buy more quality time,” Ireland said, noting that since she started working in hospice in the late 1980s, she has seen a smaller ratio of cancer patients compared to those with other diagnoses.
Williams said Midland Care also provides palliative care, which is helpful for patients suffering from chronic or long-term illnesses but who do not meet the criteria for hospice care. However, she said she believes it’s important to plan for end-of-life care long before it’s necessary.
“I think end-of-life care needs to be planned before the cancer diagnosis or the terminal diagnosis so there’s not a lot of questions or burden on the families, making really difficult decisions at the very end,” she said. “If those discussions can start at a much earlier age, or before that time comes, so that the family knows what the patient really wants, then there’s really no doubt.”
She said dealing with these hard conversations early can make it a lot easier on families in the long run.
“Dealing with a terminal diagnosis is difficult enough, and then having to make a lot of hard decisions at that time — it’s much better if people have thought about that in advance and had some conversations with the family and with their doctor about some of the different things that you have to make decisions about at end of life,” Williams said.
Ireland said each individual and each family is unique, but it is important for patients to listen to their own inner thoughts and feelings, and for family members to remain attentive.
“Keep those lines of communication open, because things change over months — over days, sometimes — in terms of what people want or don’t want, or like or don’t like, for their care,” she said.
Planning for hospice care does not equate to giving up hope, Ireland said.
“To give up hope is to be in complete and utter despair. Giving up aggressive treatment options requires people to have a shift in the object of their hope,” Ireland said. “Hospice is not at all about giving up hope — it’s really, sometimes, about finding hope again, and finding a different object for hope.”
For example, she said some patients may find hope that they will live to witness the birth of a grandchild, celebrate holidays or even just have some good days when they can do things they enjoy.
“Hope changes shape. It’s hope for something else,” she said. “And hope is really important to having that quality of life.”
For caregivers themselves, there are certainly challenges, Ireland said, but it is very rewarding work.
“People often say, ‘How can you do that? It must be so depressing,'” Ireland said. “And sometimes it is very sad. However, providing this type of service, being with people in their last months of life or last days, I have to tell you — it’s just an incredible honor to be present and to be invited into their space to help provide comfort and provide care.”
Ireland said she views hospice care as similar to the work of midwives at births.
“I like to think of what we do as midwives at the end of life — we’re just helping with another transition,” she said. “…I think sometimes when you talk to people about that aspect, it maybe doesn’t seem quite as dark.”
Ireland said we’re all going to be there someday, and in the final moments, unfinished business often gets finished, “in very important and moving kinds of ways.”
“It’s amazing — people are amazing. It’s amazing the lives that people have lived, and it’s really an honor to be with them when they’re transitioning,” Ireland said. “It’s a sacred moment; it really is.”