People often turn to hospice care only days before death, but seeking the service earlier can bring wider benefits for both patients and their families.
“It’s an across-the-board misconception that people are in hospice for just the last couple of weeks or days of life,” said Susie Cross, a nurse practitioner with Auburn Crest Hospice in Coeur d’Alene, Idaho. “There is so much more that they can accomplish if they get in earlier.”
With goal-setting and pain management happening months ahead when possible, hospice patients often gain more quality time and chances for closure, say caregivers. They urge people to call soon after a terminal diagnosis.
“If someone has excruciating pain, we can make them feel more comfortable,” Cross said. “Then you can explore using their energy really wisely, maybe writing letters for the family. You don’t have that time if you’re with someone only two or three days.”
Dr. Bob Bray, Hospice of Spokane’s medical director, sees that too often as well.
“There’s a feeling out there that you have to be actively dying to have hospice involved, down to the last day,” Bray said. “Uniformly, the most common comment when we ask the survivors about their experience is they say, ‘I wish we would have done it sooner.’ ”
People give multiple reasons for wishing they’d gained support earlier, with a main one being that their loved one became more comfortable once hospice began, and that likely would have given the person more opportunities for beneficial visits with relatives.
“The treatment of hospice patients isn’t just for the patient,” Bray added. “It includes the family, whoever the patient considers as family.
By the time hospice comes on board, the families can be very worn out. There’s a lot of support, emotional support as well as spiritual support if that’s desired, and that really helps the family as much as the patient.”
Generally, hospice providers can work with both patients and families on end-of-life goals, grief counseling, chaplain discussions, pain and comfort management, and other forms of support — from pet therapy to volunteers offering massages.
Other examples might be making a hospice patient comfortable enough to go on a bucket-list trip or to travel briefly to see relatives.
Hospice of Spokane has helped veterans feel comfortable enough with support to travel to Washington, D.C., to see military memorials through Honor Flight.
Cross gave an example of a teenager who became eligible early for hospice, but her family wasn’t ready to seek the care.
“I talked to her grandfather about talking to her about such things like, do you want a rushed driver’s license so that you can drive? Do you want to go to the prom? They may or may not be important, but do you want to explore such things?”
WHEN TO CONTACT HOSPICE
To start in hospice care, one requirement is that a patient have a doctor’s terminal diagnosis of six months or less, but also that the person has decided against pursuing any life-extending treatments for a wide range of diseases, Bray said.
However, once someone enters hospice care, the individual’s treatment might extend beyond six months if appropriate, or in some cases, a patient’s health improves enough to go off of hospice care while receiving periodic checks from hospice professionals.
“We like to give people many weeks or many months if possible in hospice care,” said Kim Ransier, Hospice of North Idaho executive director. “There are so many things we can help them with, such as all the planning, helping to prepare the family, helping you use what energy you have to determine what does this look like for you?”
“We can ask, ‘Are there things in life left undone that we can help you prepare for?’ That might be helping to facilitate calls to family you’ve become estranged from. It might be arrangements to go fishing one last time on Hayden Lake.”
Some hospice patients learn only during final stages that they have a short time left, Bray said, but still people who get a terminal diagnosis months ahead tend to delay hospice services.
“About half the people we admit die within 14 days,” said Gina Drummond, CEO of Hospice of Spokane. “The average length of stay for us as an organization for a patient in service is 52 days.”
A majority of the service’s care is provided in a home, she added, rather than in a Hospice of Spokane facility. “People tend to put it off,” she said. “If you’re even wondering, call us. We can help sort out if it’s time for hospice.”
That call also can mean support from licensed counselors, she said.
“Maybe it’s a fractured relationship they want to work on, or maybe it’s to make sure their dog has a good home,” Drummond said. “It’s hard to give you all the examples of unfinished business, but most of the time it’s about relationships, and having really important conversations with loved ones.”
Other times, Drummond added that hospice workers can help alleviate fears a patient might have for children or a frail spouse to be cared for after they’re gone.
OTHER HOSPICE MISCONCEPTIONS
Some people mistakenly believe end-of-life care is very expensive, according to Ransier.
However, she said hospice costs are covered by most insurance plans, including Medicare and Medicaid, once someone is considered eligible for the care. Generally, benefits pay for costs related to the terminal condition, including drugs, respite care, medical equipment, supplies, and other expenses.
“If someone needs a medical bed, hospice pays for that,” she said. “Also all medications that are needed based on hospice care, hospice would pay for.”
“For families, you don’t have to worry if someone will run out of pain medicine or medicine for nausea control.”
Sometimes people also assume hospice is only for cancer patients. Regional professionals describe helping people who have a range of conditions, including heart and lung diseases, kidney disease, multiple sclerosis, and amyotrophic lateral sclerosis (ALS).
Another misconception is that the service only benefits the patient, but hospice includes many services to help family and close friends as well, including support for caregiving and emotional needs. Drummond said spiritual support that’s provided can be huge for families.
“Our chaplains are really good at helping people look at what has given their lives meaning and also helping them to look at what they hope for,” she said. “Having the time to establish a trusting relationship allows for some of these conversations.”
“When they are able to share with their loved ones what’s on their minds and hearts, I think this is helpful for them in achieving as much peace as possible.”
Additionally, hospice offers grief counseling for family and friends that can extend for just over a year. Sessions can be geared to children and adults through individual counseling as well as group support.
Bray said some family members might be surprised by who needs that support.
“When my mother was on hospice some years ago, I thought my dad would be the last person in the world who would want or need to be a part of grief counseling. He found it to be very helpful and beneficial,” he said. “I think people sometimes have preconceived notions of whether family or extended family would need these kinds of support.”
Bray sees another common misunderstanding about hospice among people who had delayed entering the service because of fears it would take them off medicines that make them comfortable, or perhaps introduce a drug they fear such as morphine.
Hospice experts can answer questions about appropriately using medications such as ones that ease suffering, Bray said, and caregivers are regularly around if concerns arise.
“If they come in and have medication that helps them with symptoms, we continue them on that as long as that medicine isn’t for life extension,” he said.
Drummond said another misconception is that the service is only about dying.
“One of the common misconceptions is that we’re going to walk in wearing black and talk about death,” she said. “We talk about life and maximizing the quality of life.
“We want to make sure that the days they have left count. We’re helping them achieve those goals.”
WHAT IS HOSPICE?
The National Hospice and Palliative Care Organization defines hospice care as a model for compassionate care for people facing a life-limiting illness or injury, under a team approach to provide medical care, pain management, and emotional and spiritual support tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.
In the U.S., about 1.3 million patients received hospice care in 2013, according to the Centers for Disease Control and Prevention.