This article is provided by Lincoln Medical Home Health and Hospice. It is a continuation of a series of articles celebrating November as National Home Care and Hospice Month.
Hospice care is a team effort. Trained health care professionals guide the patient and his or her loved ones as they face a terminal illness, and focus on symptom management and emotional and spiritual support at the end of life. This interdisciplinary team consists of doctors, nurses, home health aides, social workers, and trained volunteers who work together with a common goal: To help keep the patient as symptom-free as possible, in the comfort of home, with loved ones nearby until death.
Susie Compton, RN, is the Administrator for Lincoln Medical Home Health and Hospice. “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?’, explains Compton. “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”.
An individual plan of care is developed utilizing team members as follows:
The Hospice physician, or medical director, oversees the plan of care, and provides consultation or primary care whenever necessary to ensure pain and symptom management. 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. “Our medical director is Dr. William Jones”, states Compton. “He is a tireless, compassionate, and dedicated proponent of excellent palliative care for our patients, and is available to the team 24/7.”
Registered Nurses 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”, Cheryl Albury, RN, explains. “We are well trained in end of life care and although we are very different in our personalities and approaches, we are united in our desire to help our patients and families be as comfortable as possible, and feel supported through their journey”.
Social Workers offer emotional support to all involved, help the family understand and cope with the related emotional and/or financial stress and provide counseling. They can also assist with practical matters such as completing advance directives and providing information about options for final arrangements. Linda Mills, LCSW states, “At Lincoln Hospice, I am also our Spiritual Coordinator, and I discuss spiritual questions that may be important to patients and their loved ones. If requested, I am able to offer support for patients and their families to explore spiritual or faith-based issues. A volunteer chaplain can work with a family or I can work with the patient’s clergy, if appropriate, to make sure spiritual needs are being met”.
The position of Bereavement Coordinator is also held by Linda Mills. For at least a year after a patient’s death, she provides support to surviving loved ones through visits, phone calls and mailings, as well as through support groups. She also coordinates the annual candlelight memorial service which honors the patients who have passed away while under hospice, and encourages members of the community to express their love and grief for those friends and family members who have died. “I start assessing the family’s needs for grief and bereavement support as soon as a patient is admitted”, states Mills. “Each person is so different in how they grieve and deal with loss, and I work with each family to see what kind of support I can offer.”
Home Health Aides provide for personal care needs such as bathing, changing bed linens, taking vital signs, and assisting with other basic care needs. “My hospice patients are very special”, states Brenda Monks, a hospice aide for many years. “It’s an honor to work with them and help their families. I look forward to seeing them every week!”
Key members of the Hospice Team are the Volunteers. These dedicated individuals 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. Marge Redden has been a Hospice Volunteer for over 20 years. “I love being a hospice volunteer. It is very rewarding to assist patients and their families at such an important time in their lives”.
The interdisciplinary team coordinates and supervises all care 7 days a week, 24 hours a day, and is 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. It definitely includes the patient’s caregivers who 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. Debbie Groce, RN, states, “In-home hospice care is not a continuous 24-hour service, and the patient’s caregivers are truly the ones 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”. Patients and their caregivers are encouraged to contact hospice team if they are having a problem or need a question answered, any time of the day or night. There is always someone 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.