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Feature Stories

Dying with dignity: How hospice care can help

Dying with Dignity

Cindy Richards, Editor

When Lorelei Hill learned she was too ill to get a heart transplant, this mother of two young children began planning the end of her life. In hospice care, she helped her husband and kids come to terms with her impending death. She knew she succeeded when her daughter, then 8, said, "Mommy, even if you're not with me, I know you will always be with me in my heart."

A Canadian, Hill happily ended up with a new heart. She also saw first-hand how hospice care in Canada is just as important to its health care culture as curing patients. In the U.S., the health care culture focuses far more on continued attempts to heal. This means we can miss chances to help patients and their families prepare for death, hospice care advocates say.

Medical care aims to cure, while hospice care is palliative – aiming to relieve physical and mental pain. It lets terminally ill patients spend their final days, weeks or months taking pain medications to ease physical symptoms so they can focus on unfinished business – anything from having final conversations with loved ones, to perfecting their putting technique.

'Midwife into hands of God'

Sunny Langlinais, a non-denominational hospice chaplain in south Houston, says her job "is to help [patients] say what they need to say before they leave – to seek the forgiveness, love, reconciliation, whatever they need – and help them come to terms with the fact they are dying. Then I midwife them into the hands of God, whoever their god happens to be. In the process, I also minister to the families, help them let go, say goodbye, and be OK with the process."

Hospice care is covered by Medicare if patients are:

  • Eligible for Medicare Part A (hospitalization)
  • Get care from a Medicare-approved hospice program
  • Sign a statement choosing hospice over continued treatment
  • Have a doctor and hospice medical director who certify they likely have under six months to live. This can be the hardest hurdle.

Tough conversations

It wasn't part of medical training for Dr. Danny Thomason in the late 1990s. Instead, he learned about it a few years ago when he became the medical director for Interim Hospice in Tulsa, Okla. "Sometimes it's easier to treat towards a cure than to have the tough conversations that come with the end of life," Thomason says.

"The longer I [work in hospice], the more I find most families and patients are already thinking about end of life. They wonder, 'Am I going to suffer? Will I be in pain?' Not everybody is ready to sign up for hospice, but usually, people welcome the conversation." He starts that conversation by asking patients: "What do you know about where you're at with your disease? What is your goal? Do you want to extend your life? Or do you want to have the best quality of life in the time you have?"

Dr. Marianne Pavach, a former hospice medical director (she had the terminally ill patient who spent his final days perfecting his putting skills), now serves as medical director for Blue Cross and Blue Shield of Illinois. She says patients have a role in the conversation, too. "If somebody is proposing a course of treatment to you, ask them, 'Are you trying to cure my condition, prolong my life without a cure, or make what time I have left better?'"

She says "it's better to err on the side of being a little early" entering hospice so patients and family members can take full advantage of the physical and emotional comfort that can come from hospice. Indeed, statistics from the National Hospice and Palliative Care Organization show hospice stay lengths are very short. The most recent 2011 figures show half of patients received 20 days or less of hospice care – far less than the six months hospice experts recommend.

Dr. Paul Kinsinger is a family physician and co-medical director for a hospice program in central Illinois. He calls the team of hospice workers who provide end-of-life care "Mother Teresas." They are focused on caring for the "whole person," according to the federal Centers for Medicare and Medicaid Services. The team may include doctors (hospice doctors as well as your regular doctor), nurses, counselors, social workers, physical and occupational therapists, speech-language pathologists, hospice aides, homemakers, and volunteers.

Agreeing to move from treatment to hospice care is not irreversible. If a patient's health improves, Medicare allows the patient to stop hospice care and resume treatment – 278,000 of the 1.65 million hospice patients in 2011 did just that. So, Langlinais, the Texas hospice chaplain, says, there's no reason to be afraid of hospice. "The thing I hear over and over is, 'I wish I had done this sooner.'"

Choosing the right hospice program