As members of the IDT, patients are not passive recipients of healthcare services, but rather active directors of their own care. Who is to say what constitutes high quality end-of-life care? Increasingly, and despite contrary responses among some healthcare providers, experts agree that the most defensible answer to this question is, "The patient, that's who." Not the patient's doctor, nurse, or social worker. Not his or her family members or other caregivers. These individuals may, and in most cases, should provide guidance to help the patient understand his or her illness and prognosis and make informed decisions regarding care. But whenever possible, final decisions regarding care are best made by the patient.
The term family members is used loosely here to refer to individuals close to the patient who provide care — emotional, physical, financial, or otherwise — to the patient. It is well documented that family members, primarily spouses and adult children, provide the bulk of care to the frail elderly. A 1999 study reported in the New England Journal of Medicine confirms that they also provide the vast majority of assistance with nonmedical end-of-life care. The study showed that in 96% of cases the primary caregivers for terminally ill patients were family members. Most patients relied completely on family members and friends for assistance with such tasks as transportation, homemaking, nursing care, and personal care. Providing such care can be physically taxing, emotionally draining, and financially burdensome. It can also be unspeakably rewarding, both personally and spiritually. This aspect to care giving accounts for why most caregivers do it and why they wouldn't dream of not doing it. But they need assistance. All healthcare members of the IDT are responsible for helping family caregivers to help the patient. These informal service providers need training and education so that they can safely and effectively meet the medical and personal care needs of patients at home. They need counseling to help them cope with the demands of caregiving and with their own emotions and grief. They need practical assistance in obtaining and managing all the medical and nonmedical services the patient requires. At times they need an understanding look, a caring smile, and a shoulder to cry on.
In the TCPC Program, a hospice care physician and the patient's primary physician jointly share responsibility for the patient's care. In practice, the hospice physician typically undertakes most ongoing medical services while coordinating care from other providers, including the patient's primary physician and specialists. This approach helps prevent the service fragmentation that otherwise often occurs in healthcare systems.
Hospice care physicians are proficient in treating advanced illness and managing pain and other symptoms. As the physician representative on the IDT (primary physicians rarely attend the team conferences), the hospice care physician ensures that consensus about care is reached between specialists and other physicians involved in the patient's care in consultation with the patient and family. Patient choice and informed decision-making are emphasized in the development of the care plan.
Medicare and most other medical insurance plans pay for "medically necessary" care. The hospice care physician certifies that the patient needs the services provided and signs the plan of care. All changes in the plan of care and the patient's condition are reported to the hospice care physician and documented in the patient's clinical record. In turn, the hospice care physician communicates or collaborates with the patient's primary physician on changes to the plan of care.
RN Case Managers
The hospice care nurse works with other members of the IDT to develop and implement the patient's plan of care. He or she functions as a care manager coordinating the implementation of the care plan. The nurse also shares an advocacy role for patients and families with other members of the team. In developing and maintaining collaborative relationships with other members of the IDT, the nurse must be flexible in dealing with the inevitable role blending that takes place. Skilled services are provided by or under the supervision of registered nurses following a medically approved plan of care developed by the IDT. Hospice care nurses are adept in the art and science of pain and symptom management and have well-developed physical assessment and evaluation skills. Other services include administration of medication and treatments, emotional support, and patient and family education and instruction. Each nurse care manager maintains contact with the patient and family and other healthcare providers across the continuum of care should the patient require services outside the home setting.
The hospice care nurse collects patient and family data through assessment of the patient's physical, emotional, spiritual, social, psychological, and cultural status. The nurse assesses the patient's and family's coping strategies, support system, and learning needs in collaboration with other members of the team. The scope and intensity of reassessment is determined by ongoing and systematic evaluation of the patient's needs and family condition. Real or potential problems to be addressed are derived from analysis of the multidimensional assessment data collected by the team and validated by the patient and family.
Hospice care social workers provide counseling and spiritual care to help patients and their families address their economic, psychosocial, and emotional needs. Skilled in active listening, the social workers take their lead from their clients, assessing the patient's and family's needs and preferences for care in an initial consultation and subsequent reassessments. They then develop a social work plan of care based on their assessment findings. Of the five domains that constitute quality end-of-life care according to patients — receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden on family members, and strengthening relationships with loved ones.
Social workers help patients achieve a sense of control by discussing with them and their family members issues that both groups typically want to address but too often avoid — issues such as death and dying, substitute decision making for life-sustaining treatment, and memorial planning. They help alleviate the burden on family members by assessing the patient's and family's economic, psychosocial, and spiritual needs, and then helping to obtain resources to meet those needs. They might, for example, assist patients with applying for In-Home Supportive Services or Meals on Wheels, and help caregivers arrange for respite services. They also help strengthen relationships between patients and their loved ones through such services as individual and family counseling. They help patients and families find closure by discussing the patient's achievements, assisting with life review, and, in some cases, by helping to create a memorial videotape of the patient for the surviving family members. A wide range of other social work services are available depending on the needs of patients and family members.
The social worker works closely with and supports the work of other IDT members. Often, the social worker shares care management duties with the hospice care nurse. Like the other members of the core IDT, the social worker is a constant in the patient's care, from admission on through the dying process.
The hospice chaplain, as an integral member of the hospice team, is a medical professional who plans, assesses, and cares for a patient’s spiritual needs throughout the end-of-life process.
The role of a hospice chaplain is crucial, as many people turn toward spirituality for comfort at the end of life, and the expert spiritual care and counsel that a chaplain provides is paramount in helping patients — and the caregivers, family, and friends who love them — find peace.
By better understanding the role of the hospice chaplain, their goals for care, and how they provide that care, we can better understand the incredible level of spiritual support that every hospice patient is provided on the the end-of-life journey.
The chaplain is dedicated to providing the patient with care and spiritual counsel that meets their needs and is in accordance with that patient’s wishes. If a patient does not wish to engage with a hospice chaplain or any form of spiritual care, they do not have to. It is entirely optional and the patient can change their mind at any time.
Chaplains do not seek to convert patients or bring them into the fold of a specific religion, but to instead meet the patient where they are on their spiritual journey and help the patient discover renewed meaning and spiritual peace. Regardless of religion, creed, or culture, a chaplain’s purpose is to provide patients with compassionate spiritual support and counsel.
Certified Nursing Aide (CNA)/Home Health Aides
New Hope Hospice aides provide personal care under the supervision of the RN case manager, utilizing the interdisciplinary plan of care, written assignment and direct observation. The home health aide participates in the team meetings, documents care, patient response, and observations made.
When hospice care is provided to patients who reside in a nursing facility, the role of the hospice aide is designed to provide direct patient care on an intermittent basis. They provide care above and beyond the care that the facility is already obligated to provide. In other words, they are there to add to rather than replace normal or routine nursing care.
The following is a list of duties that may be carried out by the Hope Hospice home health aide as appropriate to their time of visit.
- Serving nourishment to the hospice patient
- Assistance with ambulation
- Assistance with or accompanying patients to activities
- Bedside visits (listening, writing letters, reading)
- Range of motion exercises
- Massage, application of lotion to skin
- Perineal care, incontinent care
- Bathing: bed bath, tub bath, shower
- Grooming and dressing (care of hair, make-up)
- Nail care
- Taking patients for walks outside the facility
- Oral hygiene
- Communication with family
- Communication with nursing facility staff
Volunteers provide important services to hospice organizations and the people they serve. Whether it’s providing companionship to a person in the final months and weeks of life, offering support to family members and caregivers, or helping with community outreach and fundraising, the contributions of volunteers are essential to the important work provided by our nation’s hospice programs.
Hospice care in the U.S. was founded by volunteers and there is continued commitment to volunteer service – in fact, Medicare regulations require that hospices have trained volunteers as a part of the services they provide which include but is not limited to:
- Listening to a patient’s concerns
- Being a comforting and supportive presence
- Engaging in the patient’s hobbies, for example, playing a board game or discussing current events
- Telling other hospice staff the needs of the hospice patient and family
- Running errands or doing light housekeeping for the patient and family
- Encouraging the patient to tell their life story.
- Providing time for the caregiver to take care of her/his self.