| |
Program Director's Annual Report (2009)
Charlene Thurston, R.N., A.N.P.
It’s been quite a year! At about this time last year, we were in the midst of deliberating over whether to work towards becoming a Medicare-certified hospice program or to change our name from hospice and work towards expanding our services for persons in the early phases of life-threatening illness. As most of you know by now, we chose the latter route and have, thus far, been surprisingly gratified by the results.
Most of the year has been spent on revising our program offerings and revising our policies and informational brochures accordingly, while continuing to offer all of our patient care services. While our end-of-life procedures remain essentially unchanged, expanding services for the early phases of illness has involved much exploration of state-of-the-art care, including what’s being offered around the country in non-hospice programs – often called “supportive care” programs. While many hospices have added some palliative care services to their programs in order to care for patients with a longer life-expectancy than six months who are continuing to pursue treatment, these services are usually fairly limited. Our goal was to become much broader in scope than this, and to offer our full range of services to patients who are even hoping to fully recover.
What we are developing is a readily identifiable program, which will encompass the entire continuum of life-threatening illness, from the time of diagnosis through cure, or, if cure is not possible, through advancing illness, death, and bereavement and support for their families. Patients in the earlier phases of illness are faced with the shock of hearing a serious diagnosis and, often, prognosis, and are faced with many major decisions, while, at the same time, feeling overwhelmed. They and their families are often destabilized as they experience grief and turmoil, and often employment and financial struggles, while they try desperately to find the best treatment options available and deal with the side effects and consequences of such treatments. If all goes well, the patient may be cured; if the disease is not curable, the patient and family must deal with the eventual terminality of the illness. In either case, their lives are disrupted for many, many months, and, often, years, and they usually don’t have a readily available program of services to help them through this experience. This represents a gap in services for a very vulnerable patient population in our overall healthcare system, a gap which we’re now trying to fill for patients in our community.
Before now, patients would go from physician to physician, and treatment to treatment, but there was no comprehensive support program in place to help them navigate through the system or to help them deal with the psycho-socio-spiritual effects of what they and their families were experiencing. While we had attempted to reach out to support this group of patients while being named “hospice,” we found that patients who were pursuing cure or life-prolonging treatments were very reluctant to access services from a program named “hospice” with its connotation of “giving up and dying.”
Our plan now is to serve as this comprehensive support program by offering individualized assessment, assistance with symptom management, education, basic counseling, stress reduction, support, and referrals, when needed. Services are offered through private consultations and group support with the appropriate member(s) of our staff, which includes a nurse practitioner, palliative care counselor, social worker, and volunteers.
It’s been interesting to see the increase in consultations and admissions to our program since beginning to publicize the changes we’re making. In compiling our patient activity statistics for the 12 months, we’ve seen a dramatic increase in the number of earlier phase patients who’ve accessed our services, especially since early ’09, the time at which the decision was made to change our name. While the number of “comprehensive care patients” (formerly called “hospice patients”), the number of community grief clients, and the number of caregiver clients remained about the same as the prior year, the number of palliative & supportive clients with earlier phase illness increased from 11 last year, to 37 this year (336% increase), with the number of private sessions for this group increasing from 63 last year to 150 (240% increase) this year! Moreover, most of the increases were seen after 1/09. This increase confirmed our belief that many more patients could benefit from our services than were accessing them, probably due to the connotation of death and dying with the name “hospice.” We’ve also found that health care practitioners from other departments and agencies are more comfortable referring patients for our supportive services than they were when called “hospice.”
While most of our efforts over the past year have been concentrated in converting the program, we’ve, of course, continued to provide our usual end-of-life care. Over the past year, 59 people have died in Nantucket from any cause, including sudden deaths, accidents, etc., and we have provided care for 25 of them (43%), a rate which is 4% higher than the national average for hospices. Over the past several months, we’ve also worked diligently, along with other concerned citizens, to try to rescue the Adult Community Day Center from being cut from the services of the town.
We were thankful that a sense of the meeting vote at the recent Special Town Meeting demonstrated overwhelming support that the program be continued. We’ll continue to work to try to maintain this very important service, a service which we helped create in 1991.
Our volunteers have provided a total of approximately 400 hours to support patients and caregivers over this period. Most volunteer assistance has been utilized in providing respite to caregivers through our caregiver support program.
Other activities we’ve been involved with have included continuing to assist Cradock Hospice in South Africa, continuing to provide education on advance directives, and continuing to provide professional development opportunities, both for our own department’s staff and for staff of other departments and agencies. Over the past year, I’ve attended a Cancer Guides Workshop (complementary and alternative therapies in cancer care), and will be attending Harvard Medical School’s Palliative Care Conference in October, and our Palliative Care Counselor is attending 2 workshops to further develop her skills in Thai Shiatsu Massage, a type of bodywork that we’ve been offering to decrease stress and enhance well-being. We’ve recently sponsored 14 participants’ attendance at the Alzheimer’s Services “Seminar by the Sea,” a conference which focused on the use of compassionate touch to help calm and soothe patients. The attendees included our Volunteer Coordinator, 3 of our volunteers, our Social Worker, 1 Home Health Aide from the Visiting Nurses Dept., and 8 staff members from Our Island Home. In October, we will be sponsoring tuition and transportation costs for 4 professionals to attend the Annual New England Hospice and Palliative Care Conference, 1 of whom will be from the hospital’s medical-surgical unit, 2 from Our Island Home, and 1 from our Palliative Care staff. We’ll also be covering transportation expenses for 2 patient care assistants from ACDC (Adult Community Day Center) to attend a free, one day, off-island conference on Alzheimer’s Disease. We’ve been able to offer such excellent opportunities this year thanks to a very generous grant from the Dorothy Egan Foundation designated for continuing education of direct care staff.
As we look to the coming year, we’ll be continuing to develop our new services, providing more informational outreach, and converting our website to reflect our program changes. As always, we acknowledge and appreciate our colleagues in other departments and agencies with whom we work so that patients in our community receive the best care possible by their health care team, and, of course, we continue to deeply appreciate the work of Hospice Care of Nantucket Foundation, without whom none of this would be possible.
Patient Care Statistics – 9/1/08-9/1/09
Comprehensive care patients: 25 patients – this includes physical, psychosocial, spiritual care to patients in any setting – home, hospital, or nursing home – and support for their families both during the illness and for approximately 1 year after the death of a patient. The total number of patient care days was 1828 for this group of patients. The average length of time on our services was 75 days, with a median of 28 days. Total number of days spent in the hospital was 227, while total number of days spent at home or nursing home was 1601 days. (Note: there were 59 deaths from any cause in Nantucket during this period.) (25 patients were served in the prior year also.)
Palliative & supportive consultations: (These are consultation sessions for person in earlier stages of illness.)
Total number of individuals for private sessions – 37
(11 in prior year)
Total number of private sessions – 150 (63 in prior year)
(84 of which included relaxation/massage) (63 in prior year)
Total number of individuals for Cancer Support Group sessions – 23 (12 in prior year)
Total number of Cancer Support Group visits – 131
(75 in prior year)
Community grief consults: (These are grief support sessions for community members who experienced the death of a relative who was not a “comprehensive care” patient.)
Total number of individuals – 15 (12 in prior year)
Total number of private sessions – 86 (87 in prior year)
(57 of which included relaxation/massage) (61 in prior year)
Caregiver support services: (These figures reflect services for mostly “non-comprehensive care” family members.)
Total number of individuals – 23 (17 in prior year)
Total number of private sessions – 46 (71 in prior year)
(8 of which included relaxation/massage) (49 in prior year)
Total number of individuals for “Time Out” group sessions – 7 (5 in prior year)
Total number of “Time Out” group visits – 53 (50 in prior year)
Totals:
Total number of clients served: 130 (“comprehensive care patients & families are counted as 1 client) 82 prior yr.
Total number of “comprehensive care” patients/families – 25
(25 in prior year)
Total number of non-comprehensive care clients – 105
(57 in prior year)
Total number of non-comprehensive care client visits – 466
(346 in prior year) (149 of which included relaxation/massage/yoga)
(209 in prior year)
|
