The term hospice continues to evoke an emotional response when discussed within the context of patient care planning. Hospice is a relatively new care modality in the United States, introduced in 1963 by physician Dame Cicely Saunders during a guest lecture at Yale University. Dr. Saunders originally started her career in healthcare as a nurse caring for dying patients and their families in England. Her work in offering specialized care to the dying and their families began in 1948 and eventually resulted in the first modern hospice facility known as St. Christopher's Hospice located in a suburb of London. Hospice is the linguistic root of the word "hospitality" that was used in medieval times to refer to a place of rest and protection for the ill and weary on a long journey. Dr. Saunders's lecture fostered discussions and ultimately led to a series of events that stimulated further investigation and research on the topic of death and dying in the United States (National Hospice and Palliative Care Organization, 2016).
In 1969, psychiatrist Dr. Elisabeth Kubler-Ross wrote her famous book, On Death and Dying, which defined the five stages of death and dying that we are familiar with today. She based her findings on data collected from over 500 interviews with dying patients. In her book, Kuber-Ross challenged providers to consider home-based care in lieu of the traditional institutional setting, giving patients and families the right to make decisions that impact their final destiny. Dr. Kubler-Ross was a champion for the hospice movement in the United States and a strong advocate of home care. She believed that our society had difficulty in dealing with death and older citizens, and as a result, placed them out of sight (institutionalized) to avoid the difficult reminder of our mortality. She advocated for a team approach through home-based care where patients and families could benefit from the full range of care during their final days at home (National Hospice and Palliative Care Organization, 2016).
Home healthcare clinicians working with the geriatric population in the community setting are often faced with assisting patients through transitional periods. A frequent transition is the one in which patients and families decided that comfort and quality of life have become their priority. Hospice focuses on comfort over cure and supports patients and families in their desire to avoid future hospitalizations, and invasive or futile procedures. Home healthcare clinicians can support, educate, and facilitate appropriate and timely referrals to hospice.
Hospice is offered to individuals in the last 6 months of life or longer when the hospice team certifies that the patient has a condition that is life-limiting. Hospice can be provided in hospitals, assisted living facilities, nursing homes, private hospice facilities, and home settings. Referral and evaluation for hospice can be initiated by anyone, but a follow-up order from the patient's physician is required. Individuals at the terminal stage of diseases such as heart failure, cancer, lung disease, kidney failure, or dementia are eligible for hospice care. Hospice not only provides care to the patient, but offers support and education on death and dying to family members by providing them with tools for bereavement and preparation for their loved one's eventual death. Some hospice organizations routinely provide follow-up support to grieving family members up to a year after the loved one's death. Hospice also provides respite care, where patients can temporarily reside in a respite unit while family caregivers rest and recharge so that they may be able to continue to offer care to their loved one (Mayo Clinic Staff, 2016).
The typical hospice team consists of healthcare professionals with specialized knowledge in treating patients and families coping with end-of-life issues. If care is delivered outside of a dedicated hospice facility, hospice staff will visit the patient on a regular basis to provide care and treatment. The treatment team will consist of the patient's primary physician (if desired), and a hospice physician who will oversee the care of the patient. Patients should be encouraged to select their physician of choice to manage their care while in hospice. A hospice nurse will see the patient regularly to assess and treat as well as coordinate care with other disciplines. Home healthcare aides are routinely available to assist with personal needs such as bathing, dressing, and eating. Spiritual care and guidance is provided to the patient and family by lay ministers, priests, or chaplains. Pharmacists make recommendations regarding medications to effectively manage symptoms and treat pain. Speech, occupational, physical, and music therapists are available to assist in providing a safe environment, address functional independence, adapt to needs, and provide alternative methods to manage discomfort, pain, and anxiety. Social workers are also available to provide counseling and support; they can identify and pave the way for other important community-based resources that patients and families can benefit from. Specially trained volunteers are available to support patients and family in a variety of needs from respite care, to picking up medications and transportation for appointments. Bereavement counselors specialize in working with families once their loved one has passed and up to several months after the death. Finally, the hospice staff is on call and available 24 hours a day 7 days a week to provide care and support to their patients and families (Mayo Clinic Staff, 2016).
Hospice is covered by Medicare, Medicaid, the Department of Veterans Affairs, and most private insurance carriers. Hospice agencies must be approved by Medicare to be reimbursed and patients and families should always be advised to discuss financial arrangements prior to initiating services.
To obtain specific information on hospice programs, patients and families should be encouraged to talk with their family physician, nurses, social workers, counselors, and friends who have had experiences with hospice to learn about personal impressions. In addition, the National Hospice and Palliative Care Organization offers an online provider directory, and some states offer a list of preferred hospice organizations. Hospice programs can be based out of religious, hospital, and private organizations. It is important for patients and families to choose the program that most closely fits with their personal philosophies and spend adequate time asking questions and voicing concerns.
Home healthcare clinicians work with patients and families as they journey through many transitions. The transition to end-of-life care is an emotional and difficult subject for both clinicians and patients. Home care clinicians largely view their work as preventive and restorative and often give little thought to end-of-life issues. Providing patients and families with the education and knowledge they need to make healthcare decisions, particularly decisions related to their right to self-determination and end-of-life care is an important part of providing holistic care. Appropriate and timely education and referral to hospice can maximize patient and family functioning, relieve caregiver burden, reduce futile treatment and hospitalizations, and ultimately contribute to a longer and better quality of life.
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