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.

Hospice Definition (assistedlivingtoday.com)
Altering Body and Soul
The Myth of Death with Dignity
End of Life Care and Cultural Competency
Cradle to Grave – Health and Illness

Hospital room — “Room 143 Needs a Bedpan!”

A tirade by a nurse and a human being.

Walking down a corridor in a recent visit to the hospital, I was lulled out of my thoughts by the abrasive sound of a hospital employee yelling out “Hey! Room 143 needs a bed pan. Can you take care of it?”

Dressed in institutional blue with her name and the status of ‘Registered Nurse’ printed on a plastic pin, she had a tired body and bitter eyes.

Further on, another employee, hair dyed a bright blonde and nails turquoise was speaking in a voice that all could hear “Hi Hon! Here’s your medicine. Then we need to move you into the chair, ok?” Evidently the blonde had not been taught that speaking louder will not cause a non-English speaker to suddenly understand. There are times when I am seriously disturbed by the attitudes and platitudes of those who work in my chosen profession of nursing, and healthcare in general.

When did we decide it was ok to strip men, women, and children of the dignity of identity and make them room numbers? When did it happen that the renowned professor of neuroscience became room 143 and the Mexican immigrant in room 144 became “Hon”, a term reserved for those with whom we have a relationship?

When we strip people of their identity it is easier to treat them as widgets on an assembly line that involve chores but no human interaction. We have turned what we affectionately call our “healthcare system” into many people’s worst nightmare, only they don’t get to wake up and say “It was only a bad dream!”.

Worse, there are those who feel that a complaint will surely affect those we love who are in room 143, and bring about a pay-back of sorts that includes inadequate care and bad behavior.

I’m not asking that hospitals and clinics be resorts or day spas. I’m asking that they address the fundamentals of human dignity and realize that referring to people as room numbers fails to deliver.

I wish I had an answer to my rant. I do believe that once we figure out how to put human dignity back into the healthcare equation we will have a better foundation by which to address the healthcare crisis.

Perhaps putting human dignity in the formula starts with making healthcare less about healthcare executives (who I guarantee will one day be “Room 143”) and making it more about the patients.