Testimony to the
October 27, 2008
Thank you so much for inviting me today.
My name is Diana Peirce. I’ve been a hospice nurse and director of
hospice and palliative care in
Hospice programs provide mind-body-spirit inclusive care during their patients dying, and bereavement care for at least a year after death for the survivors. An interdisciplinary team of nurses, nursing assistants, social workers, counselors, spiritual care providers, rehab therapists, physicians and volunteers minister to individuals at or nearing end of life, and their loved ones. From state of the art pain and symptom management techniques to complementary therapies; from counseling for the children to pastoral care for all; from rehab therapies that enhance independence and comfort to care giver support – we ask patients to help us identify and prioritize their needs, and then we seek to meet those needs. Each dying person is unique, and his or her dying is as well. We serve people wherever they are: in hospitals, nursing homes, residential care facilities, homes for those with developmental delay, in prison, at home, and even when they don’t have homes. Our programs are relatively small, on a given day serving six to forty patients each.
Reimbursement
About 75% of those we serve are covered by the Medicare
hospice benefit. The state of
The Barriers
1) Financial, certainly. Given the cost of medications alone, the task of keeping things in balance fiscally can be daunting.
2) Medicare benefit restrictions and a new round of audit and oversight are currently looming. Because hospice provision has grown a great deal recently, our federal government assumes that someone must be cheating and making money. (Guess they haven’t studied the demographics or considered the aging population.) Truth is, we’ve been encouraging better understanding and access to our services in recent years. I just came from a national conference where we heard about the next round of scrutiny, targeting the care we provide in nursing homes and the care provided to patients who live longer than 6 months in hospice care. (On average, in VT, patients live in our care for less than 6 weeks, but each program has a few who defy the odds and predictions.) The assumption by the government is that we’ve done wrong, billed for care we shouldn’t have provided and it’s our task to prove otherwise. This “proving” takes precious time, energy and money---resources which must be devoted to responding to audits, and therefore may not be available for providing care to dying Vermonters.
3) Physicians who are unable, for one reason or another, to see palliative and good end of life care as appropriate and active interventions for some of their patients. I think this has improved in the past several years, but it’s still hard. It takes courage and experience and a belief that good end of life care is just as much of an active treatment as that last round of chemo or another stint on a ventilator in ICU or one last cardiac function potentiating device. We still receive referrals of patients who have been told “There’s nothing more that can be done for you—it’s time for hospice.” Indeed the promise of cure or even temporarily arresting disease progression may no longer be feasible, but nothing more…hardly. There are many kinds of healing, other than the obvious. Providing and receiving good end of life care helps us all to experience a different sort of healing.
4) Patients and their families who can’t bring themselves to consider end of life, much less end of life care. This too is so very difficult. It’s painful to lose a loved one to death. It’s tough to leave behind those you love.
5) Competition from other treatment options. There’s always another therapy, it seems. I’ve heard single digit percent chance of remission made to sound like a sure thing. Many patients reach us only during the last 2-3 days of life, after trying “just one more thing”.
6) And then there are, of course, our own organizational struggles:
Finding adequate staff and the dollars to pay them as all healthcare entities compete for the same dwindling pool of available staff members.
Finding new hospice leaders as those of us who’ve been here for a long while reach retirement.
Fundraising and grant funding. Most of us breakeven only through the generosity of our communities in the form of town fund support, support of fundraising events and memorial contributions. As the economy worsens, these dollars are harder and harder to come by. Did I mention that bereavement care to surviving loved ones is required to be provided for at least a year after a hospice patient’s death by Medicare and Medicaid, as well as private insurers, but reimbursement ends on the date of death? Because, in addition to being required, we believe that good bereavement care is so vital to the health of our communities, most of us offer groups and counseling services to all survivors in the community, whether or not their loved ones died in hospice care.
And yet, I cannot imagine a world, a state, a community where hospice didn’t exist. A good hospice program is its community’s treasure. We should be the direction anyone in our community turns to for help when death is near or has occurred. The dying need their community. In many Renaissance era paintings, you will see, if you look carefully, a tiny skull or skeleton obscurely placed, even in an otherwise pastoral scene or portrait. These Memento Moris----reminders of death----were placed to honor and recognize the presence of death in the world of all. I like to think they also represent the many lessons the dying have for us. Yes, the dying need their community, but to be full communities we need our dying. They force us to consider eternal profound issues: to listen, to feel, to hope. And we need our hospice programs kept strong and healthy to carry those messages and to nurture and care for those dying and bereaved members of our communities.
For this hospice nurse, there has never been any doubt about the need for and the rightness of this work.
Thank You