Hospice Care – Quality Care at the End of Life

In an appropriate follow-up to yesterday’s post, Jan Klingberg takes us into the realities of hospice care. Hospice care is often misunderstood and I’m grateful to Jan for giving us first hand information about this important service. 

Kristine’s husband, Gerry, returned home from the hospital with end-stage cancer after his doctor bluntly told him to get his affairs in order. The family panicked. How would they manage? Especially with twin preschoolers at home.

During many years as a communications and fundraising professional for a hospice program in Illinois, I have seen firsthand the challenges of life-threatening illness—for the patient and family alike. When treatment becomes futile at best, hope for a cure disappears and hopelessness can set in.

But what if instead of being hooked up to machines in the hospital or going it alone at home, your loved one could be cared for in a program that would reawaken hope—a hope for comfort, peace and dignity …

  • Encircle you and your loved one with care and support tailored to your needs,
  • Arrange for the delivery of a hospital bed, supplies and medication,
  • Visit your loved one regularly to provide medical care and other treatment to ease pain and discomfort,
  • Be at the other end of the phone 24 hours a day, and
  • Support you when your loved one is dying and for months afterward.

Our hospice program became Kristine and Gerry’s lifeline that made their last weeks together bearable. A team of professionals and volunteers surrounded the family with a multitude of services and strong support. Medical care addressed Gerry’s pain; counselors helped Kristine journey through her despair over losing her husband; social workers helped the extended family work through some tough issues; volunteers ran errands and shared babysitting shifts; experts in children’s grief worked with the twins and coached Kristine. And even when Gerry’s pain soared out of control at home, he was able to spend a few nights at our specialized hospice inpatient unit where 24-hour nursing care helped stabilize him.

Were the family’s last weeks together easy? Of course not. But they were transformed into a manageable journey that allowed Gerry to die comfortably at home, his wife and kids at his side. He was reassured to know that after his death, Kristine and the twins would be carried through their grief rather than being left alone with their terrible loss.

In the years prior to my retirement last fall, I became aware of many stories similar to Kristine and Gerry’s. The overwhelming emotion of family members after the death of their loved one was gratitude—for providing support and restoring hope. And I don’t believe I ever heard anyone say, “We called hospice too soon.” If anything, many were disappointed that they had waited too long before engaging a care system that could surround them and their loved one with what they needed to live life to the fullest in the time that remained.

Hospice has been a lifeline to thousands of people around the world for decades. The modern hospice concept actually got its start in the late 1960s in England where specialized care for the dying showed dramatic improvement in symptom control. This new unique blend of medical, emotional, spiritual and psychosocial care—palliative care—comprehensively treats the person rather than solely the medical condition.

Then amid the phenomenal medical advances of the 1970s, dedicated healthcare professionals and community volunteers in the U.S. saw the need stateside for an interdisciplinary and compassionate approach to end-of-life care. From the first U.S. hospice program in 1974 to the current 5,000+ programs nationwide, hospice professionals have relieved pain and suffering day after day, year after year. My own family—mom, dad, aunt—were cared for by hospice programs in other states. Though they operate slightly differently from the one I worked for, they have the same core belief that drives the care they provide—everyone has the right to live with dignity until the last moment.

A long-time friend—a control freak who lived alone and had every loose end tied up—said when she became one of our patients and entrusted her care to my colleagues, “It is such a relief knowing that I don’t have to manage alone anymore. These people know what they are doing … they’re the pros.”

When a loved one has a life-threatening illness and the prognosis becomes months and not years … when the goal for care becomes comfort and symptom management … why not choose the hospice experts who promote quality of life until the very end of life?

AUTHOR’S NOTES:

  • The National Hospice and Palliative Care Organization (NHPCO) has a wealth of information about hospice care and can help you find a program near you.
  • The NHPCO service, Caring Connections, offers resources for advance care planning, caregiving and living with a serious illness.
  • A high percentage of hospice programs are certified by Medicare. This means that they have core services provided by a hospice team (physicians, nurses, nurse’s aides, social workers, grief counselors, chaplains and volunteers) and can receive reimbursement for the care of a patient who has Medicare Part A. Many private insurance companies and state Medicaid programs have modeled their payment systems after the Medicare Hospice Benefit, so the costs of care are covered for most patients who are eligible for hospice.

6 thoughts on “Hospice Care – Quality Care at the End of Life

  1. Hospice care blessed my family when my dad was in his last days of life. Esther Itty and the rest of the nurse staff were so supportive and tender. I will be ever grateful!

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  2. So glad for this post knowing that you have such a wide base of readership. I say a hearty AMEN to all she spoke. I was the benefit of hospice when caring for a friend during her final days of her breast cancer journey. Even though I am a nurse, I needed the support and encouragement that hospice provided for the entire family and caregivers. And I agree, the only regret, is that the family resisted hospice care for too long and we did not have their support sooner. Now as a Nurse Clinician in the Lung Cancer Dept, I have a different relationship with hospice nurses and continue to be so very thankful for them and their team. Hospice is vital to improving quality of life. Often we bring in our Palliative Medicine Team for all our patients, and especially for those resistive to Hospice Care. Thanks again. This is a great public service.

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    1. Lou Ann – so glad to hear your perspective. I agree. I think I knew when I first read the post that it would be like a public service announcement. Good to hear that validation – particularly from someone with your background and knowledge.

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  3. Both my mother and brother had hospice care in their last months of life. It was a Godsend. They were soooooooo good. They knew the right things to say for all of my questions, they were supporting and super caring. A nurse’s aid would come in and put lotion on my mother’s dry skin and gently rub it in. I only hope my mother was conscious enough to feel their compassion.

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    1. I have no doubt that your mother felt it. I somehow believe that we will always be conscious enough to know compassion. Thanks for sharing. While so sorry that you lost both of them, I can imagine hospice was a gift. So much misinformation about what hospice is, what they do – and then a testimony like yours to the importance of the care hospice brings. Thanks again.

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