On January 27th, Family Caregiver Alliance hosted Helen Bauer, RN, and Jerry Fenter, spiritual counselor, both from The Heart of Hospice in Beaumont, Texas. The speakers offered suggestions on how to pick the best hospice options for you. Additionally, they explained the rights of the patients and who the care team is. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes. This talk is NOT specifically about hospice care for Parkinson’s or any disorder.
The speakers noted that hospice is not a place; it is a philosophy about respecting the body and improving quality of life for patients as they move through the disease trajectory. There are many misconceptions about hospice care, such as hospice hastens death or is only for the last few days of a person’s life. These are false as hospice does not hasten death, or prolong life, and hospice is actually for anyone with limited life expectancy (6 months or less) as decided by physician.
The speakers recommend interviewing three or four hospice agencies. To find hospice agencies, first use word of mouth, and then the “Care Compare” tool from the Center for Medicare and Medicaid Services.
The speakers described some questions to ask hospice agencies when interviewing, such as the nurse caseload, are the nurses or medical directors certified specifically in hospice and palliative care, is the agency accredited and by whom? Additional logistical questions on what equipment and medicine are provided, bereavement care, and what disciplines are on-call are also suggested.
Next, the speakers explained the rights of the patient. This includes the right to change agencies, file a complaint, which disciplines to see, which medication to take, which doctor they would like to use, and others.
Finally, the webinar clarified who exactly is on the hospice care team. The team includes a registered nurse, the physician, spiritual counselor, social worker, hospice aid, volunteer coordinator and bereavement coordinator. Infrequently, the nurse practitioner, therapies and dieticians may also be used.
For more resources on hospice care, please see the websites below:
- Care Compare Website from the Center for Medicare & Medicaid Services
- National Hospice and Palliative Care Organization Website
- Hospice Foundation of America Website
- BK Books (Barbara Karnes, RN creates End of Life Education Materials):
See extensive notes on the January 27th webinar below.
– Joëlle Kuehn
“Expect the Best: How to Get the Most Out of Your Hospice Care”
Speakers: Helen Bauer, RN, BSN, CHPN, The Heart of Hospice and Jerry Fenter, Spiritual Counselor, The Heart of Hospice, Beaumont, Texas
Webinar Host: Family Caregiver Alliance (FCA)
Webinar Date: January 27, 2021
Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach
Family Caregiver Alliance: 800-445-8106 or 415-434-3388
- 80% of Americans prefer to die at home but only 20% actually do.
- For every 1 hospice patient there are 2 more who could benefit from hospice care.
- Some might benefit from hospice sooner.
- Hospice care is often underutilized because it is misunderstood.
- 28% of patients on hospice care receive service for less than 1 week at a time before they pass away. More time in hospice and earlier referral to hospice improves end of life experience.
Myths and Misinformation:
Myth: Hospice is just for last few days of life
Fact: Hospice is for anyone with limited life expectancy (6 months or less) as decided by physician
Myth: Hospice is only for cancer patients
Fact: Hospice patients have wide variety of diagnoses
Myth: A patient on hospice can never come off of hospice
Fact: Patient or patient representative can choose to cancel hospice care and seek treatment instead. They can choose to return to hospice at a later time if the patient still meets the criteria for hospice care.
Myth: Hospice is a place
Fact: Hospice is a philosophy; most hospice patients receive care in private homes, nursing homes or assisted living facilities
Myth: Hospice agencies require patients to have a Do Not Resuscitate (DNR) document. (This is a document that states the patient does not want to have chest compressions, CPR, artificial ventilation.)
Fact: Not all hospice patients have a DNR; it’s a patient’s choice and they do not have to have one. Some hospice agencies require patients in their care to have one, but it is not widely utilized.
Myth: Hospice hastens death
Fact: Hospice does not hasten death, or prolong life. It is about respecting the body and improving quality of life for patients as they move through the disease trajectory.
How to Choose a Hospice Agency;
- Interview 3-4 hospice agencies – no doctor’s order is needed
- Word of Mouth Recommendation helps
- Sometimes there is not enough time (1 week till death), but it is important to try to find the best one.
- All hospice providers provide care under the same regulations and laws
- For-profit vs non-profit, small local agencies or large chains, but they all provide the same minimum legally required care.
- Some have extra perks and therapies but the basis is the same.
- Important to choose what is best for you, such as choosing an option that allows you to be closer to hospice care, or a larger chain because it offers more services.
- The best way to look is word of mouth
- Second best way is the “Care Compare” from the Center for Medicare and Medicaid Services
- Can choose between different hospice types: Nursing, rehab, hospice care, long term care, hospitals etc.
- Can choose the area. This is especially helpful if you are not from that area and thus do not have any contacts there that you could benefit from Word of Mouth from.
- The ratings are from the public
- Caution: the information is 2-3 years old, unfortunately there is no comparable service that has newer information
- If there are homes that are younger than 2-3 years old, they may not be included.
Questions to ask when shopping for a hospice agency:
- How many patients are in a nurse’s caseload?
- The desirable number is 12-14 patients, which is good because it is manageable and the nurse will see the patient themselves
- If it is more than 12-14, the nurse may not see you as frequently.
- Are the nurses and medical director certified in hospice and palliative care?
- This specific training is above and beyond the formal education they will have otherwise received.
- If they are certified it is specialized and current as it needs to be renewed and they need to participate in continued education throughout their certification
- If they do not have the certifications it isn’t bad but they do not have the formal education for the specific care.
- It is similar to seeing a General Practitioner versus a specialist.
- How often will a nurse/social worker/spiritual counselor see a patient who is stable and during the dying process:
- Stable: The nurse should see them once a week, and the social worker once a month.
- Dying process: Nurse should see them daily or as needed and the social worker as much as needed
- What disciplines are on call?
- Not all crises happen during the work day, so it is important to have people available.
- Is just the nurse on call, or also the Social Worker and a Spiritual Counselor?
- There should always be someone available. It could be a triage nurse who determines what and who to send over.
- What medications and equipment will be provided?
- It depends on the need of a patient. They are required to pay and cover all medication and equipment related to patients terminal diagnoses, which is the primary diagnoses and any contributing diagnoses as well
- Medication: They are required to cover all medication and equipment to help with symptom management: pain, shortness of breath, anxiety, nausea etc.
- Other than symptom management it depends and is up to the discretion of the agency
- Equipment: Will be determined by the need of the patient. Some equipment is prescribed by doctor or nurse for helpful reasons
- The agency has a basic list of equipment they supply: wheelchair, walker, hospital bed, oxygen tank, suction machine.
- Specialized needs such as a high back wheelchair or other chairs are above and beyond. You need to ask the agency if they will make it available to you.
- Since October 2020, hospice agencies are required if requested to let the patient and family know what medications and equipment they will not supply.
- How are complaints handled?
- What is the procedure if there is a complaint?
- Workers are human and make mistakes, rare but it may happen.
- Is agency accredited and by whom? (CHAP, Joint Commission – most common, ACHC, state agencies and health departments)
- Being accredited means they passed tests
- Can a patient/caregiver attend hospice team meetings?
- The meeting is between the care team and usually has the nurse, Social worker, and physician
- They meet every 2 weeks and meet to talk about the patient’s needs and any changes to care.
- The patient has the right to, so you would expect the answer of yes.
- It is limited because you can only sit in for your patient, not any other patient they may cover during that meeting.
- What facility is the agency contracted with for respite care and General Inpatient care (GIP)?
- If the caregiver gets 5 days of rest to recharge, where does the patient get sent to in the meantime?
- It is very important because it could be a bad organization with poor reviews.
- GIP is where the patient would go during a crisis time, would be good to know so that that facility is also up to your standards.
- How long have they been in business?
- Good to know but longer does not necessarily mean they are better.
- What is the typical on-call response time?
- There is no specific number to expect to hear because it varies on where the patient lives (in the country, metropolitan area with traffic etc).
- What bereavement care is provided after the patient dies?
- Every hospice agency is required to provide bereavement care for up to 13 months.
- The type and quality and quantity of services that are provided varies. For caregivers, family, anyone who was in the circle of patient’s care.
Rights of the Patient (And the caregiver because sometimes caregivers make decisions)
- Agency choice: the patient has the right to choose the agency, although there are limitations on how often they can change agencies.
- Choose what disciplines see the patient: some might refuse a social worker or chaplain
- Nurse is not possible to refuse
- To get the full benefit they should allow all
- The hospice chaplain has more end of life care training that the person’s personal faith organization’s pastor or priest etc may not have, would be good to have both
- DNR (Do not resuscitate) vs. full code
- What medications/equipment are utilized:
- Medication: patients may not want a pill burden (where they have to take so many pills), they may request to not have vitamins or supplements to be able to have less pills or medicine. Some patients do not want narcotics in their home but there is possible about a drug diversion, or sobriety concerns
- Equipment: they can take equipment that is useful that will fit in their homes. Some might not want a hospital bed because there is no room except for the living room and it might be sending a message about what happens in the home, and having it in the living room puts the patient in a very public area of the home
- Which doctor they would like to use:
- The doctor can go with you if the doctor is ok with that
- The doctor can collaborate with hospice medical director to provide care
- Where the care is provided: personal home, Long Term Care Facility (LTCF), Assisted Living Facility (ALF), group home
- Start/stop hospice care;
- Starting care: election
- Stopping care: Revocation
- Right to make a complaint (start with an agency administrator or director of nurses, then if they don’t satisfy you or meet your criteria, you can go to an accrediting organization or state organization. You should be given those contact numbers on the “election form” (consent form to start hospice care).
Hospice Team: IDT- Interdisciplinary team that focuses on mind, body, spirit
- Registered Nurse (RN): does assessments, teaching on disease trajectory and education, and symptom management
- Physician: creates the orders for Plan of Care in collaboration with the IDT (especially the registered nurse)
- Spiritual Counselor (Chaplain): funeral planning, support of faith beliefs, counselors
- Social Worker: counseling, resources for housekeeping or food, referrals, caregiver support, patient safety (is the home safe for the patient to live in)
- Hospice aide: bathing, personal care (catheter, skin care), light housekeeping around where patient lives; unsung heroes of team
- Volunteer Coordinator and Hospice Volunteers: errands, companionship, take care of pets, music therapy, pet therapy, 11th hour volunteers (so the patient doesn’t die alone). Law requires that 5% of patient care hours need to be from volunteer services
- Bereavement Coordinator: bereavement and grief support, help set up services, grief counseling, support groups
- Nurse Practitioner: ‘Face to Face” visit is required by regulation to recertify that they qualify for hospice care; every 60-90 days
- Therapies (physical, occupational, speech) – used infrequently, music therapy as well, can be utilized but it is up to the physician and agency to decide if they are needed, need to improve quality of life
- Dietician – consulted for dietary needs (ex: if they can no longer swallow)
Questions and Answers:
Question: How much does hospice cost on average? How does Medicare fall into that?
Answer: Medicare and Medicaid cover hospice but there is a small copay, although most agencies will waive the copay so the care is provided with no charge to the patient at all. For private insurance, the policies may vary, it is important to look at your benefits.
Question: When is the right time for hospice? Specifically a family member with dementia?
Answer: Hard to determine because dementia is a slowly progressing illness. I recommend contacting an agency and they can come and do an evaluation to see if a patient qualifies for hospice. For dementia they will look at how well can they walk, how much can they talk, and how much of what they say is reality-based?
Question: What is full code (regarding the difference between DNR vs. full code)?
Answer: Full code is 911 emergencies are present, medication is given intravenously, CPR, ventilation, chest compressions etc, and the process is continued as the patient is moved into the hospital.
Question: Are there any other alternative websites more recent for Care Compare?
Answer: Nothing publically available, but look at agencies in your local area, and ask what extra services they provide. We recommend word of mouth as the best option.
Question: What kind of help is provided at time of death? (certifying, arranging cremation or burial)
Answers: Advanced care planning helps with figuring out funeral plans when they are needed. We will gently introduce the realities and start asking what do they want? Formal Funeral and memorial service? Cremation? We want to help them express their wishes more than anything.
Question: Criteria for hospice? Only 6-months life expectancy? How does it work with conditions that are long term such as MS or ALS? What other factors go into deciding?
Answer: There are tools utilized to determine life expectancy, such as PPS or the Karnofsky scale. It’s determined by the physician and they look at how much care the patient has needed in the last year, such as the number of falls, number of hospital visits, and how responsive they are to treatment. There are other factors, the 6 months isn’t a hard fast rule, but less than 6 months certifies the person as terminally ill. If a person lives past the 6 months they are recertified and the care continues.
Question: I have trouble with the RN and the elder care facility RN, they aren’t communicating and on the same page. How often should these two be communicating? What steps should we take to mitigate this?
Answer: Every time a hospice person visits the patient, they need to let the care team and primary caregivers and family know. If there are issues, speak to the Director of Nurses for the facility and the hospice agency. You have the right to make a complaint and change agencies.
Question: What have some hospice challenges been due to the COVID-19 pandemic? What changes have happened?
Answer: There are more video calls. Depending on the facility they may refuse visitors. Hospice staff try to do care virtually but if they want to be in person they will be wearing full PPE. They take precautions such as no unnecessary anything, for example only necessary equipment, and only bring in what is absolutely necessary because everything is a transmission risk.