Hospice is not a place, but better described as a holistic approach of care to bring comfort, dignity, and “pain” relief to a person and family exhausted from the battle against a terminal illness. Hospice care is provided where the patient resides, be it home or in a facility. There is often a misconception that choosing hospice is giving up, much like a death sentence. A more accurate description is the choice to step off the battlefield to spend the time you have left in the familiar comfort of home among the support of family and friends, rather than hooked up to distracting machines beeping at you in a sterile, cold hospital environment. Often, pain relief and comfort is secondary to the pursuit for a extending life in the hospital, so many patients who go into hospice care are relieved to finally be out of debilitating pain with poor symptom control, and that respite gives them time to spend with family while participating in making the necessary preparations for the end of life journey.
Pain relief described by hospice pioneer Dame Cicley Saunders is relieving not just physical pain, but also emotional, social, psychological, spiritual and existential pain that arise when confronting the end of life. In centuries past, hospice was a shelter for exhausted travelers. In 1967, Dr. Saunders opened the first hospice St. Christopher to provide “total pain relief” to dying patients in London. She introduced this philosophy of care to medical professionals at Yale University in 1963.
Today, hospice is a specially formulated team of professionals collaborating to treat the “whole person” therefore all aspects of care include the family and community revolving around that person. It is patient-centered care rather than disease-centered treatment. The patient and family are an integral part of the hospice plan of care.
The hospice interdisciplinary team consists of:
Hospice Physician—a physician trained to care for terminal ill patients and knowledgeable on prescribing the kind medications and treatments necessary to palliate the symptoms brought on by a terminal illness.
Hospice Nurse—a registered nurse who manages the plan of care that entails the pain medications, equipment such as a hospital bed and supplies that create a low-tech-medical setting in the home to maintain the needs of a terminal patient. The nurse makes routine visits to the home and educates the family to ensure proper medical care of the patient. A nurse is on-call 24-hours a day, seven days a week.
Social Worker —a counselor who assesses the family dynamics to minimize distress, promote a stable environment and provide all aspects of end of life planning, grief counseling resources for the family, financial planning, family work leave paperwork assistance and all other psychosocial care.
Spiritual Care Counselor —a non-denominational spiritual counselor to provide support to the patient and family. The spiritual care counselor is connected with all faith-based communities in the local area to resource clergy and support if requested.
Volunteer —a friendly visitor trained to promote the social aspects of care such as conversation at the bedside, music, pet therapy, life review video and holding vigil.
Home Health Aide—A trained medical professional who can be assigned by the nurse to provide assistance and routine visits to help with bathing, grooming and giving the special care that brings comfort by meeting patients personal needs.
What does Hospice look like?
Hospice referrals can be initiated by the patient, family/caregiver or physician. To begin hospice services, a physiciandetermines that there is a prognosis of 6 months or less should the disease run its normal course, and the patient chooses comfort care vs. curative treatment.
The hospice team comes into the home to create the most comfortable environment possible for you and your family. This means a hospital bed, or other medical equipment, can be ordered for the patient to allow the home setting to adapt to the needs of the patient and caregivers. The hospice team can provide a 24-hour, seven days a week on-call support. The team provides all of the direction and resources necessary to ensure that the wishes of the patient and family are at the center of consideration with every decision made on behalf of the patient. Routine professional team visits are made to support the patient and the family through the final stage of life. This also means setting up an end-of-life plan. Hospice encourages family funeral planning, financial planning, to relieve distress for the patient and family. Hospice relies on the family and community around the patient to care for him. There is a hospice benefit that provides respite, an in-patient facility for a short period time needed, when the family caregiver needs a break.
“Death is the final stage of growth,” Dr. Elisabeth Kubler Ross once said, and then wrote a whole book on the subject. One should realize that hospice provides a time and space for the family and the person confronting end of life to make preparations, decisions and plans that will help everyone grow closer together at a time when families feel like they are being wrenched apart. And after the death, the family becomes the patient supported with bereavement resources and support for 13 months. The 13 months is to carry the family through the first anniversary of death, often the most difficult period on the grief journey.
Hospice Is Not
Some people have the misconception that hospice is full-time custodial care for the dying. Quite the contrary, what hospice does is help and educate you as a family and community how to take care of your own in this final stage of life. So, hospice relies heavy on family members and community members to perform the daily duties such as feeding, bed-changing, bathing, toileting and all other basic needs of the dying. Hospice provides an interdisciplinary team of professionals that reinforce the framework of support the patient and family already have in place. A health aide from hospice can be assigned and they can come in to help with bathing and other basic needs on an as-needed basis. If a caregiver is needed to help the maintain the level of care necessary then the social worker can provide a local referral. If a person is in a nursing care home, hospice is there to professionally manage the nursing home plan of care as related to the terminal illness, including care plan oversight, medication management and symptom control.
Palliative care treats the symptoms brought on by a disease. It is often used interchangeably with hospice care. It’s the same model of care utilizing the interdisciplinary team of hospice, but without the six-month or less to live stipulation. Palliative care can be dispensed in a hospital and was formed as a medical specialty because often people were not getting the care they needed on social, emotional and spiritual level in the hospital when coping with the realities that come with terminal illnesses. In these cases, the patient is not ready to give up the battle, or go home, or maybe the doctor feels the patient is not ready to give a hospice referral. Whatever the circumstance, the palliative care team meets the patient right where he or she is at and helps facilitate a more open communication about end of life care and planning.