When you elect hospice services, one of the many benefits you receive is a team of health professionals to be with you through your hospice journey. This team of hospice providers will begin their services as soon as you sign the last hospice agreement at your Admission Visit.
The below information is only to be used as a starting point and guide for basic information about your Hospice Team. Hospice agencies all differ and vary on the roles and expectations of their own team members. Some Hospice Agencies have different types of Volunteers and the services the Volunteers offer (COVID has put a damper on many services that were once offered pre-pandemic through Volunteer Services and other Therapy Services). Always consult with your own Hospice Team with any questions or concerns regarding the roles of the hospice team members for your loved one, and what types of services are available for your loved one.
Your Hospice Nurse
Also known as the RN Case Manager or RNCM
The Hospice Nurse, or Hospice Nurse Case Manager, will be the representative from hospice that leads and manages your medical/hospice/health cares. Your Hospice Nurse will be a Registered Nurse, not an LPN. He/She will manage your medications, provide education on end of life cares, and will teach you and your family/caregivers about what to expect as you journey through your end of life. Your hospice nurse will be the main contact between you and your primary (or attending) physician and will receive orders from your primary physician for any comfort related needs, including medications, supplies, and DME. How many times the hospice nurse visits you a week depends on your needs. Each visit will be one-hour in length, usually. Medications will be reviewed, safety will be reviewed, skin checked, appetite assessed, review of bowel movements (yes, that’s important), and a more thorough assessment will be performed focusing in on your terminal diagnosis (the reason you are on hospice services). Your hospice nurse will visit you as often as is needed. As your loved one starts to decline, your nurse will increase their frequencies during the week (more visits during the week). The hospice nurse will also manage any symptoms you may experience during your journey. Medicare requires that all hospice patients have a Hospice RN. The Hospice RNCM primarily works during the day, and any symptoms or urgent needs that come up after hours will be taken care of by the on-call Hospice Nurse (see below for their part in the team).
Your Hospice Social Worker
Your Hospice Social Worker plays an important role in the psychological (MIND) and social aspects of your hospice cares. Your Hospice Social Worker will provide emotional support to you and your loved ones through active listening and education during their visits. The Hospice Social Worker also works with the needs of various family dynamics, provides both education and support with the terminal disease progression, provides guidance throughout the hospice process, and can help coordinate the delivery of needed supplies and DME (equipment for in the home). Your Hospice Social Worker is also well-versed in developing Advanced Directives (living will, Health Care Power of Attorney) and can help families understand the process of the hospice benefit from Medicare. If you need assistance with any future planning (such as funeral home or insurance needs) your Social Worker will be the professional from the team to help guide you. Often times, Social Workers will visit hospice patients and focus on Life Review which includes reviewing all the accomplishments achieved during your lifetime. They may even help you with any legacy projects you’d wish to create for your family (or they will help coordinate a Legacy Project with the volunteer team). Not only does your Social Worker do all of the above items, but they are your source for any questions about Medicaid, Community Resources, and can provide pre-Bereavement support (which is support you or one of your loved ones may need to help you with the expected and upcoming loss). Social Workers are a KEY and IMPORTANT member of the Hospice Team.
Your Hospice Chaplain
Your hospice chaplain is an optional service, but is highly recommended. Your hospice chaplain won’t come and preach sermons to you, won’t force you to become religious, won’t make you say prayers, and won’t make you do anything you do not want to do. Instead, your Hospice Chaplain will provide spiritual support wherever you may need support – through life review, sharing stories of life meaning, prayers, Bible readings, communion, religious or spiritual rituals, or through helping to answer questions about mortality and beliefs about life after death. The Chaplain provides spiritual support to the hospice patient and to family members also. Hospice Chaplains will not replace any church affiliation or church leaders that are important and connected to the hospice patient. Your Hospice Chaplain will be an additional support to any support you already receive from your church.
The Hospice Chaplain is like a Taxi Driver for the Hospice Patient. The hospice patient hops into the “taxi” and tells the Chaplain where they would like to go: Maybe start driving towards stories about where they were raised, turn left at the corner and start talking about their family, then head over towards questions about feelings about loss, maybe make a stop with a prayer, and then head over to reviewing highlights about life. The Chaplain takes the “taxi” wherever the hospice patient would like to go.
Your Home Health Aide (HHA)
Your Home Health Aide is also an optional service. Home Health Aides are Certified Nursing Assistants who can provide personal cares (bathing, showering, toileting, dressing, basic home cares like changing sheets, etc) and/or companionship for hospice patients. Home Health Aide visits are usually one-hour at a time. Visits can be one time a week or up to seven days a week, depending on your hospice agency and the needs of the hospice patient. As hospice patients start to decline in condition, requiring more assistance from caregivers, Home Health Aide services may be increased in frequency (more visits a week). Your Hospice Nurse Case Manager will develop a HHA Care Plan (a list of cares to be performed, and specific information about performing them) that the Home Health Aide must follow.
Hospice Volunteers are VERY special individuals who donate their time to hospice patients and/or the hospice agency (they work for FREE). Some volunteers work in the office helping to make copies or coordinate paperwork, put together information packets, perform filing, and/or answer phones. Other volunteers provide companionship and friendly visits to hospice patients. There are also Hospice Volunteers that work together to provide a bedside vigil for hospice patients who are actively dying. And, there are volunteers who provide friendly pet visits, massage therapy, music/singing at bedside, and other beautiful shared talents for the hospice patients. Each Hospice Agency has their own Hospice Volunteer program with their own volunteers and special talents that they can offer to hospice patients and their loved ones. Although a Volunteer Program is mandatory by Medicare, having a volunteer for your loved one is optional.
Your On-Call Hospice Nurse
Also known as the Hospice Visit Nurse, After-hours Hospice Nurse, Triage Nurse
The Hospice Visit Nurse begins their shift after the RNCM has completed their shift (usually around 4:30PM). They are available for any questions, concerns, falls, changes in conditions, and deaths. They usually work 4:30PM until 8:00AM. Do not ever hesitate to call your hospice team after hours for an urgent need, as that is what the after-hours nursing team is hired for. Most agencies forward their main number to an answering service after hours (usually from 4:30PM-8AM). If you needed to talk to a nurse after hours, call the main number. The answering service will answer and will gather information from you: Your name, your loved one’s name, your return call, and a brief description of what is going on/what is needed. The answering service will page the nurse on-call and you should get a call back within 10-minutes. If you do not receive a call back within 10-minutes, call back again. Your on-call hospice nurse should have full access to your loved one’s medical record including medications and other pertinent information needed to provide cares.
THE MEDICAL DIRECTOR: The Medical Director is a MD/Doctor who works for the hospice agency. Every Hospice Agency has a Medical Director who oversees the hospice program and cares the hospice patients receive. The Medical Director will provide direction with the incoming referrals to determine if the patient is appropriate and eligible for hospice services based on the determine terminal prognosis (they will determine if the patient has a life expectancy of six months or less if the disease took its normal course). The Medical Director has experience in hospice and/or palliative care and is a leader amongst the Hospice Team.
THE PRIMARY PHYSICIAN will over see the hospice patient. The Primary Physician can be different than the Medical Director, or the Primary Physician can also be the Medical Director. The Primary Physician does not work for the hospice agency. Different hospice patients within a hospice agency can have different primary physicians (some are oncologists, some are family practice physicians, and some are other types of specialists). The patient can choose their primary physician, but the primary physician must agree to oversee the patient’s hospice cares (some primary physicians do not want to oversee end-of-life cares and will defer all cares and comfort orders to the Medical Director of the hospice agency). The primary physician will provide orders for the hospice nurses during hospice services, and will sign the death certificate.
OTHER HOSPICE TEAM MEMBERS: Besides the above team members, there are other team members involved in the hospice agency including Office Coordinators, Intake Coordinators (they coordinate incoming phones and referrals from physicians for patients needing hospice services), billing specialists & coders (for submitting insurance claims), Clinical Team Managers (supervisors), and bereavement specialists (who follow loved ones for 13 months after the death of the hospice patient).
Remember, providing cares to your loved one on hospice is a TEAM approach. There are many team members involved including you and your loved one. Therefore, it is important to ALWAYS maintain clear communication amongst each other to provide the best, and most comfortable, end of life cares possible.
The above information is only to be used as a starting point and guide for basic information about your Hospice Team. Hospice agencies all differ and vary on the expectations of their own team members. Always consult with your own Hospice Team with any questions or concerns regarding the expectations of the hospice team members for your loved one.