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The conversation no one wants to have

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Barbara Ivanko
Barbara Ivanko

One of our basic freedoms is that of self-determination – especially in areas that impact the course of our own lives and those we love.

We spend each day making choices – large and small – about how we live. Informed decisions on how we spend the end of our lives are at least as important as more mundane choices.

Studies show that while people across the country are increasingly embracing hospice, many receive hospice care too late, including sometimes in the last three days of life. By accessing hospice care sooner, patients and families can benefit from months, rather than days, of extraordinary healthcare in their homes, symptom control, and enhanced quality of life. One of the most frequent comments hospice providers hear from patients and their families is “I wish we had called you sooner!”

In her book “Knocking on Heaven's Door: The Path to a Better Way of Death,” author Katy Butler recalls the experiences of her parents at end-of-life. She explains that after suffering a stroke at the age of 79, her father slid “year by year into dementia and misery.” Witnessing the experience, Ms. Butler's mother saw firsthand healthcare's practice of promoting treatment at all costs – and she also realized she did not want that for herself.

Butler's mother suffered from two damaged heart valves and by the time she was in her 80s, her quality of life was diminished to the point that she had trouble catching her breath. Urged by her doctor to have surgery, she refused in light of the associated risks. Even after a heart attack months later, Butler says her mother rejected risky emergency surgery and chose hospice. As Butler explains in her book: “She (her mother) was lucid and conscious to the end. She avoided (being) plugged into machines.” Why? Because she had a plan. She did her homework. And she made an informed decision.

Katy Butler's mother was like most of us. She desired quality at the end of her life. She wanted to enjoy every minute she could with those she loved. She wanted to make the most of every day.

Unlike most of us, though, she planned ahead – and told her family exactly what she wanted.

Hospice providers often find that many families end up making decisions in a time of crisis, and sometimes without the calm reflection of the patient. These conditions are less than ideal for making well-considered choices.

Despite the fact that the modern hospice movement began more than 40 years ago … and despite the fact that hospice has been a service that Medicare covers since 1982 … too many people still don't understand what hospice is. And too many make important decisions while in crisis mode.

Perhaps the best way to understand what hospice is to understand what hospice isn't. Hospice is not “giving up.” It's not a “place where people go to die.” And it's not a “death panel,” as some politicians suggested a few years ago.

Yes, hospice is for patients with life-limiting illness, but that doesn't mean the patient stops living. In fact, research shows that hospice actually extends life expectancy for certain diagnoses. Hospice clinicians are experts in maximizing quality of life for patients, and in engaging in discussion about the burdens and benefits of treatments. With attention to all of the variables involved, patients and their families can choose a course of medical care that is aligned with their goals. Patients may want to take advantage of the extended services that some hospices offer above and beyond traditional medical care: such as massage therapy, pet therapy, expressive art and music, or the opportunity to record their life story on video.

Contrary to popular understanding, hospice is a type of specialized clinical care. More than 90% of hospice care is provided wherever a patient calls home: whether that is in his or her own private residence, a long-term care facility, or independent or assisted living residence. Some hospices also offer the safety net of inpatient hospice centers for brief periods of acute symptoms that can't be managed at home. The hospice team clinicians – which includes physicians, nurses, social workers, nursing assistants, spiritual care counselors, volunteers and bereavement counselors – help patients and their families identify their care priorities, and ensures that these goals are respected. Comfort and time with family and friends are frequently cited as goals of care.

The California HealthCare Foundation commissioned a survey last year that shed light on the gap between our culture's wishes and actions.

More than 80% of respondents indicated that it's important to have end-of-life wishes in writing. Makes sense, right? But less than 25% have actually completed advanced directives.  The Foundation also asked “what matters most at the end of life?”  The top answers included:

  • Making sure family is not burdened financially by my care.
  • Being comfortable and without pain.
  • Making sure family is not burdened by tough decisions about my care.
  • Making sure my wishes for medical care are followed.

What do these answers tell us? Most people clearly know what is important, and what they want for themselves, yet many delay or miss entirely having this difficult conversation. Our society has conditioned us not to talk about death. According to nationwide surveys of Medicare recipients, this avoidance of documenting wishes results in a gulf between what people want their last months to be like, and what actually occurs; frequent hospitalizations, and intensive care.

We have an opportunity to set the course for how we live - until the very last moment. Hospice philosophy embraces every patient's right to excellent medical care, aligned with the patient and family's wishes. Hospice embraces dignity, respect, comfort and choice – and hospice care is covered by Medicare, Medicaid and most private insurance.

Dame Cicely Saunders, founder of the hospice movement, put it beautifully when she said "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die."

Those in long-term care are no exception – take the time to make sure your family knows that a “good death” means to you and write down your wishes. The peace of mind it provides you and your loved ones will be priceless.

Barbara Ivanko is the president and CEO of Family Hospice and Palliative Care. Family Hospice and Palliative Care is a non-profit organization founded in 1980 and serving nine counties in Western Pennsylvania. 

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Guest Columns

Guest columns are written by long-term care industry experts, ranging from academics and thought leaders to administrators and CEOs.

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