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The Connecticut Hospice
"Adding Life to Days"

ontrary to popular belief, the Connecticut Hospice is a hospital, a hospital of the most noble design, about and for the living, conceptualized with the whole family in mind. The new 52-bed hospice hospital, supported and integrated with a statewide home care program, is the largest acute short-term care hospice/hospital in the United States, and one where its highly trained and experienced staff and its visionary director, Rosemary Johnson Hurzeler, have pushed the mission and definition of the hospice discipline to a new height. Located on a rocky perch ideally suited for the vision it has of itself, the hospital boasts a breathtaking view of Branford's Homeport Cove, has its own adjoining sandy beach, and its own offshore island, nestled amidst tall oaks and maples which dot the landscape. It is a location that is as serenely defining as the concept of hospice itself, and it is especially so with this hospice. The Connecticut Hospice, where hospice itself took root from the beginning.
The concept of hospice and palliative care was conceptualized to provide medically directed interdisciplinary support for adult and pediatric patients in various phases of incurable disease, so that the person may live as comfortably as possible. The net effect would be one of empowering the patient during this time, enabling them to retain their humanity, to live with dignity and caring to the very last. Connecticut Hospice has done an incredible job in fulfilling that mission by providing a host of approaches that deal with the physical, social, spiritual and emotional needs of patients and their families who are facing irreversible illness. Unfortunately, optimal hospice and palliative care programs to address pain and suffering in the dying have been vastly underutilized and undervalued by both the public and healthcare professionals in America. Approximately a quarter of a million patients in the United States die each year in need of hospice care intervention. The reasons for this, according to Michael Merson, M.D., dean of the Yale School of Public Health, is that "misunderstandings about hospice still permeate our society as well as our medical profession… many physicians do not know the eligibility criteria even for referring patients for hospice services, and some fail to communicate the seriousness of an illness in ways that patients and families understand, so that the options for care at that stage can be considered."
Out of the necessity to raise awareness in both the patient and caregiver community about hospice care options, the Physician Assisted Living initiative drew breath, with both the State of Connecticut and the Connecticut Hospice leading the way nationally. Physician Assisted Living (PAL) focuses on the dialogue between physician and patient. It establishes the physician's role as a pivotal participant in preparing for the possibility of advanced and irreversible illness. It as well provides the physician with a decision-making model that raises the level of discussion to hospice options by introducing crucial questions the physician, patient and family must one day address. This focus is part of a continuum of care and physician involvement that may start rather early in the course of the disease where appropriate. The CanSupport Care program is an early stage component of this continuum of care that is a disease management home care service overseen by case managers, physicians and family members. CanSupport Care includes nursing home health aide services, medical social work, and respiratory, speech, physical and occupational therapy. What differentiates the program from routine home care is the additional services of telemedicine, psychosocial counseling, a specialized oncological care team, case management across all settings, transportation to doctors' offices, and nutritional and spiritual counseling. At the juncture where disease management necessitates more aggressive palliative care with a focus on pain management, the care team is challenged to enter into a more redirecting phase with the patient. This choosing of "the next step," dubbed the "Refocus Zone" in the (PAL) model, moves the physician to plan the next course of care in the hospice continuum by involving the patient and family in an open review of the patient's condition and prognosis which leads to either: (1) a sustained focus on the disease, (2) a focus on symptoms, or (3) alternative therapies.

Pain and Symptom Management
Hospice care by definition requires expert pain management. The success of an effective pain management program is key to the hospice experience. The approach here is to anticipate events. Symptoms are treated first with appropriate medication and then regular dosing to prevent recurrence. This method provides many psychological and physical benefits for the patient and family. It reduces anxiety, promotes sleep, and increases mobility. In a recent study of pain in cancer patients, it was revealed that 42 percent receive inadequate treatment for their pain. Equally disturbing was the finding that patients over age 70 were at greater risk of receiving inadequate pain treatment. Sometimes this may occur because of physician concern about addiction, or the feeling that it may hasten death, as well as the legal liability involved. Even many patient barriers to pain relief may inhibit the pain control process, such as a reluctance to report pain, or fear that pain signifies advancing disease and imminent death. The Connecticut Hospice concept fully embraces the idea that symptom and pain control are a worthy and noble endeavor with irreversible illness; it is in a very literal way "curative" for the patient and one that can add "life to days, if not days to life."
Being involved in hospice means, as well, embracing the inescapable reality of the irreversibly ill child, and The Connecticut Hospice was one of the first to respond to the needs of these special patients and their families. The Children's Place section of the hospital was designed specifically with that in mind. Rooms are decorated for children in bright colors and adorned with articles from home. Play areas, including a swimming pool, are conveniently located throughout the hospital grounds.
The medically directed interdisciplinary team (IDT) approach speaks directly to the first of its 10 guiding principles. That the family is the unit of care in the hospice model begs a well-integrated, knowledgeable team grounded in caring, professionalism and accessibility. The Hospital employs 425 full- and part-time employees, four physicians, three nurse practitioners, two pharmacists, three community physicians who help with home care patients, consultants, a dietitian and over 1,000 volunteers on a regular basis that bring art, music, and spiritual therapies to the hospice patient community. The three to one nurse-to-patient ratio allows for the medical staff and other IDT members to have twice-daily rounds providing highly focused monitoring and interventions. This intense pain and symptom charting has made it possible for many patients to return home on the CanSupport Program. Medical and nurse consultation is available to physicians 24 hours a day, seven days a week, and patient admissions are also done around the clock and solely based on need, and not the ability to pay.
Throughout its history of providing this unique care, The Connecticut Hospice has benefited immeasurably from a legacy of choices made and needs expressed by patients and families which have made them more careful listeners, more responsive caregivers and more effective teachers. The Hospice has built a body of knowledge based on the richness of these experiences from the more than 100,000 patients and families who have been touched by the hospice experience and it has committed itself to sharing this information through the John D. Thompson Hospice Institute for Education, Training and Research. Nationally accredited, the Institute shares the hospice value system and philosophy with the professional and lay community who desire to improve the quality of care given in their own settings to patients and families experiencing an irreversible and progressive illness. Formal courses are scheduled at least once a month and cover a wide range of topics. Residence, intern and clerkship programs have been established with many of the state's academic institutions, including the Yale and UCONN schools of medicine, public health, pharmacology, and nursing. The Institute as well offers CMEs, CLUs and CECs to physicians through its curriculum conducted continuously throughout the year. Attesting to the role the John D. Thompson Institute has played and is committed to play in advancing the hospice science, Dr. Merson states, "The public education necessary to transmit to our society the merits of hospice care is monumental. Happily, more and more the media has directed attention to the terminally ill and hospice. This helps to reshape our collective willingness to discuss death, to embrace the life that is ending and to care compassionately for people whose disease can not be reversed."
The Connecticut Hospice, Inc., 100 Double Beach Road, Branford, CT; (203) 483-6327; Pamela Jackson, M.D., medical director.