Hospice Historyand Philosophy Volunteer Training
Hospice History and PhilosophyA History of Hospice Palliative CareInternational HospiceAlthough the hospice movement claims its origins in the 11th Century work of the Sovereign Orderof St. John of Jerusalem during the Crusades, the modern hospice movement has its roots innineteenth century France, Ireland and the USA. Some milestones include: 1843: A home for the dying was opened in Paris by L’Association des Dames du Calvaire leading to the foundation of six other establishments for the care of the dying between 1874, in Paris and 1899, in New York. 1879: The Irish Sisters of Charity opened Our Lady’s Hospice for the Dying in Dublin followed by others in Australia, England and Scotland, all of which still exist today and are run by the Order as modern palliative-care units. 1900: The Dominican Sisters of Hawthorne established St Rose’s Hospice in Lower Manhattan and then another in New York, followed by others in Philadelphia, Fall River, Atlanta, St Paul and Cleveland.Although not connected with each other, the principals of these organizations shared a concern for thecare of the dying, and in particular the dying poor. Although they were not places that offeredsophisticated medical or nursing care, these early facilities created some of the pre-conditions for thedevelopment of modern hospices which gathered momentum after the Second World War.
Hospice History and PhilosophyThe Twentieth CenturyBy the mid-twentieth century some important changes were occurring in western medicine andhealthcare. Specialization was advancing rapidly; new treatments were proliferating; and there was anincreasing emphasis on cure and rehabilitation. At the same time death in the hospital rather than at homewas becoming the norm; and the dying patient or ‘hopeless case’ was often viewed as a failure of medicalpractice. Concerns about improving care at the end of life began to surface more widely in the 1950s.In the UK, attention focused on the medical “neglect” of the dying; whereas in the United States a reactionto the medicalization of death began to take root. A new view of dying began to emerge which helpedrefine ideas about the dying process and explore the extent to which patients should and did know abouttheir terminal condition. An active rather than a passive approach to the care of the dying was promoted.Within this, there emerged a determination to find new and imaginative ways to continue caring upto the end of life - and beyond it, in the care of the bereaved.Dame Cicely Saunders founded St Christopher’s Hospice, in South London, in 1967, and it quickly became asource of inspiration to others. As the first “modern” hospice, it sought to combine three key principles:excellent clinical care, education, and research. It therefore differed significantly from those homes forthe dying which had preceded it and sought to establish itself as a centre of excellence in a newfield of care. Its success was phenomenal and it soon became the stimulus for an expansive phase ofhospice development, not only in Britain, but also around the world. “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.” — Dame Cicely Saunders
Hospice History and PhilosophyThe Twentieth CenturyFrom the outset, ideas developed at St Christopher’s were applied differently in other settings. Within adecade it was accepted that the principles of hospice care could be practiced in many settings: inspecialist in-patient units, but also in home-care and day-care services. Hospital units and supportteams were established that brought the new thinking about dying into the heartland of acute medicine.The work of Elizabeth Kübler-Ross in challenging the medical profession to change its view of dyingpatients brought about great change and advanced many important concepts such as living wills, homehealth care, and helping patients to die with dignity and respect. Her bestselling first book, On Deathand Dying, 1969, made her an internationally-renowned author.Even today, her trail-blazing book is required reading in most major medical, nursing, and psychologyprograms. A 1969 Life Magazine article outlining her work gave further mainstream credibility andawareness to this new way of dealing with dying patients, although her conclusions were quiterevolutionary at the time. The “five psychological stages of dying”(denial, anger, bargaining, depression and finally acceptance) outlined in her book became acceptedas common knowledge throughout the world. “She was always very proud that her work helped tobring the hospice movement into the mainstream in the United States.” “Those who have the strength and the love to sit with a dying patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body. Watching a peaceful death of a human being reminds us of a falling star; one of the million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever.” — Elisabeth Kubler-Ross
Hospice History and PhilosophyHospice in AmericaA few years before Dr. Saunders opened St. Christopher’s, she delivered a lecture at Yale University in NewHaven about her ideas. That lecture helped launch hospice care in America, for among those in theaudience was Florence Wald, then dean of Yale’s School of Nursing. According to Wald, Dame Cicelyswords changed the direction of her life. Wald left the deanship in 1968 and traveled to London where sheworked at St. Christopher’s hospice to learn its approach to patient care and to study the hospicesorganization and management. Six years later, in 1974, with the help of two physicians, Florence Waldfounded Connecticut Hospice in Branford, on the outskirts of New Haven. As the first hospice in the UnitedStates, it was also first to offer home care and today, throughout the country, over 90% of hospice care isdelivered at home.Since the mid-1970s when hospice care was introduced in America as the most innovative, comprehensiveand humane care available for people with limited life expectancies, demand for hospice care has increasedevery year.One of the most important developments in expanding access to quality end-of-life care was the passage ofthe Medicare Hospice Benefit in 1982, through which hospices receive federal funds for the care they giveto eligible patients. With this legislation, the federal government essentially declared that hospice care wasso important in relieving suffering and in bringing about a peaceful and meaningful closure to life, thatevery citizen was entitled to it, regardless of ability to pay. Although federal reimbursements for providinghospice care have fallen behind the real costs of this care, this benefit has nevertheless supported thegrowth of quality end-of-life care for all Americans.
Hospice History and PhilosophyFuture DevelopmentWithin the professional lifetime of the founders of the modern hospice movement, a remarkableproliferation has occurred. At the same time, the definition of hospice and palliative care has come intosharper focus. Recognition of the specialty of palliative medicine first occurred in the UK, in 1987, and wasseen by some as a turning point in hospice history. It was part of a wider shift away from ‘terminal’ and‘hospice’ care towards the concept of palliative care. As hospice and palliative care continues to evolve, thehope remains that the benefits of a model of care previously available to just a few people at the end of lifewill, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation ormeans.The need for hospice services will continue to rise due to the growing aging population and the risinghealth care costs. More importantly, medical professionals, as well as the general public are choosinghospice over other forms of health care delivery because of its holistic, patient-family, in-home centeredphilosophy.
Hospice History and PhilosophyLongleaf Hospice Mission:To surround patients and their families with compassionate care that enables them to embrace the end of life with dignity, courage, and peace.
Hospice History and Philosophy• Longleaf Hospice Guiding Principles – Our word is our bond. – Everyone will be treated with respect. – We will be open, honest and constant in all communications. – We will go the extra mile for every customer experience to be positive.
Hospice History and Philosophy• Longleaf Hospice Philosophy – The goal at Longleaf Hospice is to help patients maintain an alert, pain-free life and to manage other symptoms so that their final days are spent with dignity and quality, surrounded by their loved ones. • Longleaf Hospice believes that hospice care isn’t about giving up — it’s about gaining control of your life again. We promote a philosophy of care that integrates the physical, spiritual, and emotional needs of patients and their families. • The team of caregivers at Longleaf Hospice is dedicated to people live as fully and comfortably as possible. – At Longleaf Hospice, we will: • Develop an individualized care plan based on the needs of the patient and family. • Provide hospice services where the patient lives. • Work as a team with the family and health care providers. • Provide pain management appropriate for each individual patient. • Tailor care to meet the special needs and requests from patient and family.
Hospice History and Philosophy• Care at End of Life – Patients are often confronted with physical and emotional problems when at the end of life. In addition, family members experience numerous physical, emotional, and economic problems as they face the eventual loss of their loved one. These problems can extend into the bereavement period and can be further exacerbated if the family members are not receiving adequate support. – It is important to provide patients with adequate relief of physical and psychosocial symptoms as well as help families and loved ones cope with the impending loss of their family member. This must be done while maintaining dignity of the patient and family.
Hospice History and Philosophy• Ethics at End of Life – Ethics is “ the science that deals with the principles of right and wrong, good and bad: it governs our relationships with others and is based on personal beliefs and values.”• Ethical dilemmas often occur during end of life. Some of the end of life issues are: – Assisted suicide – End of lie decisions – Pain management – Palliative care – Spiritual care – Truth telling – Scientific integrity – Health care reform and access to care – Advanced directives – Effective symptom management – Confidentially• Another ethical issue comes when families have difficulty letting go. This is es pecially true in situations where family members may block or interfere with analgesic administration.
Hospice History and Philosophy• Nearly 50% of all patients going through the dying process spend most of their time in moderate to severe pain.• Most Americans would prefer to die in their own home, yet most die in institutions.• Nearly 50% of dying patients in the United States experience multiple physical and emotional symptoms that go untreated /under-treated.• These patients also experience decreased quality of life, often due to symptoms such as: – Pain – Dyspnea – Depression – Anxiety – Delirium – Fatigue/Weakness – Restlessness/Agitation – Gastrointestinal Disturbances
Hospice History and Philosophy• Barriers to Quality End of Life Care – Lack of knowledge of health care professionals can significantly impact how well patients & their families will have their physical, psychological, social & spiritual needs managed through the dying process. – Aging population - approximately 70 million individuals reaching age of 65 by the year 2030 (Administration on Aging 2000). Increased life expectancy means increase in number of elderly having to cope with concurrent chronic illness and their associated physical, social and spiritual difficulties. – Delayed access – there is a need for more timely referrals by healthcare professionals to hospice & palliative care in order for patients and their families to reap the full benefit of these services. – Realities of life limiting diseases - failure to acknowledge that the limits of medicine may lead to futile care. Use of aggressive curative treatments can prolong the dying process and contribute to physical and emotional distress of the patient. – Rules and regulations - issues regarding access to care, insurance coverage and the potential need to hire a caregiver from outside the family which can contribute to financial barriers to care.
Hospice History and Philosophy Physical Well-being• Quality of Life: Each patient must define quality of life for his/herself based on his /her life Concept of Psychosocial Suffering Well-being experiences, values, and beliefs. Healthcare must respond to the Quality psychological and spiritual needs of patients and families coping of Life with life-threatening illnesses throughout the illness and end Issues of life period including the time of death and bereavement periods to avoid increasing their suffering and isolation. Spiritual Social Well-being Well-being
Hospice History and Philosophy• Quality of Life Issues – Physical Well-being: The physical well-being of the patient is affected by various symptoms due to organic and metabolic changes, disease progression and debilitation, such as functional ability, sleep, rest, and appetite. Pain is one of the primary concerns of the terminally ill and their families/caregivers. Family members can develop/have physical needs that impact their ability to care for the patient, as well as their ability to care for themselves. Physical symptoms can manifest during the bereavement period as well. – Psychosocial Well-being: Patients experience a wide range of emotions, psychological issues/concerns, and losses (such as body image and role/relationship changes) throughout their terminal illness journey and at the end of life. Communication and support are important components in the management of the psychological domain. – Social Well–being: The social structure and integrity of the family may be threatened. Becoming a burden to one’s family is often a concern to a patient. Expressions of sexuality may change between partners as illness progresses. Children may show their emotional concerns by isolating themselves or by acting out in school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop visiting, creating social isolation for patient and family. – Spiritual Well-being: Religion gives expression to a person’s regarding suffering, illness, pain and death. Skillful attention to maintaining a person’s unique meaning of hope can enhance quality of life and help make the dying process more meaningful to the patient and family. – Concept of Suffering: Suffering is a highly personal experience and depends on the significance or personal meaning of events and losses. It is a state of severe distress that threatens the intactness of the individual. Suffering may be associated with an event(s) such as fear of physical distress, issues regarding family relationships and other roles, perceptions of self, witnessing another’s distress, an inappropriate focus on cure.
Hospice History and Philosophy• Palliative Care & Hospice During End-of-Life – An overview of the philosophy of hospice and palliative care is that dying is a unique experience and part of the normal life cycle. Support and care is provided using an interdisciplinary team approach with the focus on enhancing the quality of life for persons facing a life-threatening illness across settings. – Palliative care can and should co-exist with curative care. Introduction of palliative care earlier in the course of an illness makes it possible to recognize when subtle shifts occur and allows patients, families and professionals to adapt goals accordingly. – Goals of care change often throughout the course of illness by integrating physical, psychological, social and spiritual aspects of care. Frequent reassessment and clarification of goals, is needed by the interdisciplinary team, the patient and family. – In many healthcare settings, during clinical rotations, students have opportunities to work with patients and families experiencing the dying process.
Hospice History and Philosophy• Palliative Care “An approach that improves the quality of life of patients and their families, facing the problems associated with life-threatening illness, through them prevention and relief from suffering, by means of early identification, impeccable assessment, treatment of pain and other problems - physical, psychosocial, and spiritual.” World Health Organization, 2002; Sepulveda et al., 2002• Eligibility for Initiation of Palliative Care: – Palliative care is appropriate and can be implemented at any time during the illness experience.
Hospice History and Philosophy• Principles of Palliative Care – The patient and family (as defined by the patient) are a unit of care. – No single discipline can fully address the many concerns that patients and families have during end of life, therefore utilizing the expertise and combined efforts of the interdisciplinary team members is the key to providing holistic, comprehensive care. – The patient and family are at the center of the team. – Professional caregivers should support and be an advocate for the needs of the patient and his family so that death is a more meaningful experience for them.
Hospice History and Philosophy• Hospice Hospice care is the support and care for persons in the final phases of an incurable disease so that they may live as fully and comfortably as possible (NHPCO, 2000). Hospice also supports the surviving family through the dying and bereavement process (Egan & Labyak, 2001). Hospice provides comprehensive palliative, medical and supportive services across a variety of settings and is based on the understanding that dying is a part of the normal life cycle. Care can be provided in the home, in residential facilities, long-term care facilities and other settings (i.e. prisons).• Eligibility for Hospice: – Enrollment is limited to those expected to die within six months. – The Medicare Hospice benefit has currently expanded its hospice service options so that patients/families can receive end of life care long before the last six months of life to better meet the needs of patients dying from chronic illnesses. in additional option that has been made available to patients (and their families) who are actively in the dying process or have been determined as terminal is that they can be designated as an inpatient hospice. – An additional option that has been made available to patients (and their families) who are actively in the dying process or have been determined as terminal is that they can be designated as an inpatient hospice.
Hospice History and Philosophy• Principles of Hospice Care – The Family is the unit of care. – Care is provided primarily in the home, but can also be provided in free- standing hospice facilities, hospitals, and nursing homes. – Care involves an interdisciplinary approach to expert medical and nursing care, pain management, and emotional and spiritual support. – Care is provided primarily in the home, but can also be provided in free-standing hospice facilities, hospitals, and nursing homes. – Patient has the right to die pain-free and with dignity. – Loved ones will receive necessary support. – Focus is on caring, not curing.
Hospice History and Philosophy• Advance Directive (aka “Living Will”) – An Advance Directive is a document that lets patients state their wishes about medical care in the event that they develop a terminal or irreversible conditions and can no longer make their own medical decisions.• An Advance Directive (Living Will) becomes effective when 1. The patient’s s physician certifies in writing that the patient has a terminal or irreversible condition, and 2. After the patient’s physician writes a “do not resuscitate (DNR) order specifying the patients wishes to withhold medical care. 3. The patient may revoke the Directive at any time.• Hospitals are required by Medicare Conditions of Participation and JCAHO to inquire about Advanced Directive status upon the patient’s admission and to instruct the patient about his/her option of having an Advance Directive if so desired. If the patient has a Directive, the hospital is required to make it part of the patient’s s medical record. However, hospitals are not required to make the patient create an Advance Directive or Power of Attorney for medical care.
Hospice History and Philosophy• Other Laws and Directives related to End of Life: – Federal Patient Self Determination Act is a law that allows for patients to make choices about what is done to their bodies while they are receiving medical care through the development of the Advanced Directive (Living Will). – Georgia Medical Power of Attorney lets the patient name someone to make decisions about his/her medical care- including decisions about life support-if he/she can no longer speak for him/herself. • This person does not necessarily have to be a family member. • This person may be a Court Appointed Guardian to make decisions for an individual who is deemed incapable of making an informed decision.
Hospice History and Philosophy You have successfully completed this learning module. Congratulations! Kirsten Black, Volunteer Coordinatorkirsten.firstname.lastname@example.org — (770) 939-9179