LEXINGTON, Ky. (Nov. 30, 2011) — A study led by the University of Kentucky researcher Elaine Wittenberg-Lyles found that hospice family caregivers are "second order patients" themselves and require their own unique care needs.

The study, published in a recent issue of Qualitative Health Research, assessed the individual stressors that caregivers experience. The researchers recorded discussions between hospice caregivers and the intervention team. The caregivers were asked to identify and describe the most pressing problems or concerns they faced.

The study enrolled hospice caregivers who were 18 years of age or older and who did not have functional hearing loss, had mild to no cognitive impairment, and had at least a sixth grade education. In addition, all participants had to have access to a standard phone line. In total, the team collected discussions from 81 participants. The study was funded by the National Institute for Nursing Research.

Using a theoretical framework called Assessing Caregivers for Team interventions (ACT), the researchers coded participants' responses in one of three categories: primary stressors, which included talk that related to the performance of caregiving tasks; secondary stressors, talk about the personal impact of performing caregiving tasks; and intrapsychic stressors, talk about their thoughts, feelings and awareness of the caregiving role.

The ACT framework has been proposed as a way to understand caregiver strain and develop customized caregiver interventions to positively affect the caregiving experience and improve outcomes. The goal of the study was to describe the variances among stressors, targeting specific concerns for caregivers.

Wittenberg-Lyles, who holds a joint appointment in the UK College of Communications and the UK Markey Cancer Center, says the study further proved that caregivers are like patients themselves and should be routinely assessed for these stressors so that interventionists may help them with personalized resources and coping strategies.

"It doesn't matter how well educated you are," said Wittenberg-Lyles. "When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support."

Hospice is provided to patients who have an estimated life expectancy of six months or less. About 69 percent of hospice patients in the U.S. receive care at home from a family caregiver.

In Wittenberg-Lyles' study, nearly one-third of the hospice patients had a cancer diagnosis, and 21 percent had a primary or secondary diagnosis of Alzheimer's disease or dementia. Nearly 43 percent of caregivers were adult children of the patient, and roughly one-third were spouses/partners. In addition, an overwhelming majority of caregivers were women (79 percent).

Source: University of Kentucky

Go online at http://rabuncountyveterans.com to donate in honor or memory of a veteran, or sponsor by joining us on the 100 mile motorcycle ride on October 15th, 2011 at the Clayton City Hall parking lot at 10 a.m. All registered riders/passengers will get a free lunch and t-shirt and a magnificent tour of the Northeast Georgia mountains during beautiful leaf season.

Call the Rabun County Chamber of Commerce for more information at 706-782-4812

Happy Birthday Besse Cooper. We Georgia girls must be pretty tough, huh?

Great initiative by volunteer coordinator to enhance her volunteers' experiences. I love the quote,
“Do you really think I would visit dying people week after week for years so I could be depressed? Give me a break.”

Visit the blog at: http://janshospicevolunteers.wordpress.com/

Thanks to @jen_c_taylor for opening the door to this video through her website: http://www.livinglifedyingdeath.com/

My first month as a medical intern, over 20 years ago, I learned many important things: how to distinguish heartburn from a heart attack, how to treat pneumonia and alcohol withdrawal, how to perform a spinal tap. What I did not learn was how to manage the stress of carrying an enormous workload and great responsibility while getting little sleep and eating a diet consisting of greasy food from the hospital cafeteria and candy bars from vending machines. Stress management was not taught because the stress of being a physician wasn't acknowledged. When we were tired, anxious, sad, or sick, we just kept working.

Like athletes and soldiers, we physicians pride ourselves on working through injury, pain, fatigue, and assorted conditions that might sideline other professionals. For decades, doctors have sacrificed their own health and comfort for the sake of their patients, an ideal that has been reinforced by various media, from the embittered and overworked physician in the 1950s film The Last Angry Man to the scores of hard-drinking medical professionals in Scrubs, House, and Grey's Anatomy.

It would not surprise most people to learn that doctors have higher rates of suicide, alcohol and substance abuse, and job burnout than most people. In the past we might have written off these problems as a natural consequence of doctors working long hours in a highly stressful job, an occupational hazard of people caring for sick people, regrettable but unavoidable.

Doctors could learn a lot about stress reduction from caregivers. Shouldn't someone develop a meditation just for health care providers?

Given the ever-escalating costs of care for those in the last year of life, it’s no surprise that Congress, MedPAC and the Centers for Medicare and Medicaid Services continue to search for ways to curb those costs. What is surprising, and in fact perplexing, is the focus on the one aspect of end-of-life care that we know saves money and improves the quality of those who receive it.

In the article “Hospice problems raise concerns on oversight,” Georgia Health News reporter Andy Miller points out the significant growth in the field and raises concerns of oversight. Yes, costs and access have increased significantly. However, a deeper understanding of what lies behind the numbers must be part of the discussion.

Nationwide, the number of patients served annually by hospice has grown from 700,000 in 2000 to more than 1.5 million. This growth reflects that more Americans are opting for compassionate, comprehensive, quality care at life’s end. Hospices are meeting the needs of those in their communities.

Back in 2000, for every person who received hospice care, there were two others who would have benefited from it but did not get it. Ten years ago, the majority of those served by hospice had some form of cancer, and their illnesses followed a fairly predictable path. Today, less than 40 percent of hospice patients have cancer, and hospice providers are serving more patients with complex illnesses, such as late-stage dementia, who have uncertain trajectories, making prognosis much more difficult.

A private residence remains the primary location of most hospice care in the U.S. However, hospices have been working diligently to reach people in need of care wherever they are. Hospice is available to people in nursing homes, assisted living facilities, hospitals and residential facilities. Research out of Brown University demonstrates that having hospice care in the nursing home not only benefits hospice patients but increases quality throughout the nursing home, an important factor during these times when quality is of increasing importance.

Medicare spending on hospice has risen to $12 billion annually, or 2 percent of Medicare’s budget. These are dollars well spent. Independent research out of Duke University has shown that for every Medicare beneficiary who utilizes hospice, Medicare saves about $2,300. In an atmosphere of reimbursement cuts, with average net margins of less than 3 percent (according to MedPAC statistics), the hospice community remains a fiscally responsible provider of cost-effective, quality health care.

The past decade has seen an increase in the number of hospices nationally. With growth, we have witnessed a handful of providers that have ignored compliance standards, or even commit fraud. However, the actions or experiences of a few should not be used to paint an image of the entire industry.

As in any sector of health care, cases of fraud can be found. Expecting hospice to be immune to these challenges is unrealistic. Yet the hospice community, led by the National Hospice and Palliative Care Organization, has acted quickly and decisively to respond to these issues, providing education, mentoring and resources to help hospice providers succeed in their mission and duty to deliver high-quality care to those in the last months of life.

As was reported by Georgia Health News, hospice leadership has repeatedly called for more consistent and timely oversight of providers. NHPCO continues to lead the field in supporting legislation introduced in the Senate mandating CMS surveys of hospice programs at least as frequently as every three years.

Well before health care reform, a voluntary Quality Partners program, with self-assessments and other resources and tools to assist providers with quality measures and performance improvement, was created by NHPCO.

In addition, NHPCO has consistently supported the “aggregate financial cap” that places a limit on the amount of Medicare payment for all Medicare beneficiaries served by a hospice in a year.

Recently, concerns over the growth of for-profit providers in the field have surfaced in the media. Hospice – which began as a volunteer-led, grass-roots movement in the United States in the late 1970s – has moved beyond the all-volunteer organization. Now the hospice community reflects the broader health care industry in the nation. NHPCO research shows that patients served by both for-profit and non-profit hospices receive high-quality care.

Attention has also turned to patients who have received long lengths of service. (NHPCO research shows that in 2009, 11.8 percent of patients remained under hospice care for longer than 180 days). However, MedPAC, Congress and CMS have ignored the other end of the spectrum, offering no solutions to the problems with short lengths of stay – problems that have not changed in a decade.

More than a third of patients cared for by hospices die in seven days or less. When a patient or family receives care for such a brief period, it is incredibly difficult for hospice providers to transform the experience of the patient and family from crisis care to compassionate care.

Every aspect of health care must be reviewed to ensure that taxpayer dollars are being optimized to ensure that people receive the best possible care. But we must ensure that in our efforts to cut costs, we do not unintentionally prevent patients and families from accessing the most comprehensive, cost-effective, patient-centered care – hospice. Individuals who are facing the end of life, and their family caregivers, deserve the best humankind has to offer – and that is hospice.

J. Donald Schumacher is the president and CEO of the National Hospice and Palliative Care Organization, the nation’s oldest and largest leadership organization representing hospice and palliative care providers and professionals.

Please note the new service agreement form on the Hospice Volunteer Training Online program. Please contact me if you have any questions.

There is a general misunderstanding that you are supposed to know how to do everything on your own. This is an especially pervasive belief among helpers and healers.

Helpers and healers are notoriously bad about being able to receive. Giving – they’re all over that. Nurturing – no one better. But being able to ask for help, let alone accept a kindness – that’s a challenge.

Maybe it would help to know that by asking for help you are almost certain to learn a something new and that will help your clients. You expand your knowledge base when you ask for help. You build community. You allow yourself to feel uplifted and energized – and that’s good for everyone in your life.

A strong sense of community emerges and we’re starting to see how collaborative friendships (doesn’t this sound better than strategic alliances?) help everyone.

When you’re uncertain of your next step, consider reaching out to your community to ask for feedback, advice, ideas and suggestions. Consider asking for help. If you’re a helper or healer you may be shocked at the overwhelming response you get after years of uplifting others.

Let me know how it works out!

 

This post is a great reminder to seek the balance of receiving and giving.

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