One of the first questions that we ask when we speak with patients and their loved ones about hospice is ‘What are you most concerned about?’ Invariably, a patient will say ‘I don’t want to be uncomfortable’ and ‘I am concerned about my family. How will they take care of me? What will they do when I’m not here?’
Caregivers will say ‘Please make sure our loved one isn’t in pain, or struggling to breathe’. Caregivers will also have many questions about what to do for a patient in order to be able to have them remain at home. Our job, as a hospice team, is to develop a care plan that meets each person’s individual needs for pain management and symptom control, and supports the caregivers while they are caring for the patient, and after the patient dies.
To do this takes a team of dedicated hospice professionals working closely with the patient and the family. This team consists of physicians, nurses, home health aides, social workers, chaplains, and volunteers. They coordinate and supervises all care 7 days a week, 24 hours a day, and are responsible for making sure that all involved services share information. This may include nursing homes, assisted living facilities, in-patient hospitals, medical equipment suppliers, pharmacists, clergy, and funeral directors.
The Hospice physician, or medical director, oversees the plan of care, and provides consultation whenever necessary to ensure pain and symptom management. Our medical director is Dr. William Jones. He is a tireless, compassionate, and dedicated proponent of excellent palliative care for our patients, and is available to the team 24/7. He may work in collaboration with the patient’s primary care physician. In many cases, he assumes the role of the patient’s attending physician in managing the patient’s medical care.
Nurses, both RNs and LPNs, coordinate care by making home visits to monitor the patient, teach caregivers and provide skilled care, comfort and support. If hospice is being provided in an Assisted Living Facility or Nursing Home, the patient’s RN case manager will visit regularly, and work with the staff to coordinate the patient’s care. Nurses work closely with the Medical Director or attending physician to order medications, medical equipment and supplies. We have a great group of nurses who are well trained in end of life care and united in a desire to help patients and families be as comfortable as possible, and feel supported through their journey.
Home Health Aides provide for personal care needs such as bathing, changing bed linens, taking vital signs, and assisting with other daily basic care needs. A special bond between aide, patient, and family can occur as patients require more and more assistance.
The Hospice Social Worker offers emotional support to all involved, helps the family understand and cope with the related emotional and/or financial stress and can provide counseling. She can also assist with practical matters such as completing advance directives and providing information about options for funeral arrangements. A Chaplain is available to offer support for patients and their families to explore spiritual or faith-based issues and make sure spiritual needs are being met.
The position of Bereavement Coordinator is also held by the social worker, but is a joint effort by the social worker and chaplain. For at least a year after a patient’s death, these individuals provide support to surviving loved ones through visits, phone calls and mailings. Each family’s needs for grief and bereavement support is assessed as soon as a patient is admitted, understanding that each person is so different in how they grieve and deal with loss, and will need varying degrees of support.
Hospice volunteers are key members of the hospice team and do a variety of things such as providing companionship, running errands and offering temporary relief to the family. They also help hospice personnel in the office, assisting with filing, mailings, and bereavement support.
And, of course, the patient’s caregivers are crucial members of the hospice team. When hospice is provided in the home, family members or loved ones are the patient’s primary caregivers, managing the day to day care of the patient. They give medications, bathe and turn patients, and as a patient gets sicker and sicker, they become the voice for that patient. It’s not an easy job and they have special needs for support. There is always a hospice nurse on call to help with whatever may arise. Hospice care assures patients and their family that they are not alone and they have a team of professionals who can be reached at any time. Sometimes just knowing that can be a great source of comfort.
About the Author:
I am Susie Compton, a wife, mother, registered nurse and the Administrator for Lincoln Medical Home Health and Hospice. I have been a nurse for more than 30 years and have held this title for the past 7 years. Most of my nursing career was spent in intensive care and working with neurosurgical and stroke patients. I was a nursing instructor and Assistant Professor of Nursing at Motlow College prior to working with Lincoln Health System. I am currently certified in Hospice and Palliative Care Administration.
Working in home care is very eye opening! Caring for a patient in the controlled environment of a hospital is so different from providing care “where the patient lives”. It requires a great deal of organization, flexibility, and a sense of humor! I have a very dedicated and compassionate staff who provide excellent care of our patients.
My husband John and I have lived in Fayetteville for 18 years. He is a Certified Registered Nurse Anesthetist and a wonderful cook! We have two grown children, Callie, who works and lives in Nashville, TN and Barrett, who serves in the US Navy and is currently on deployment on the USS Lake Champlain. When not working I love to walk, work in my yard, read, write, sing and play with my cats!