Working in hospice I learned there was nothing I could say to erase a person’s pain, sadness, anger etc. I didn’t have that power and it would be irresponsible to think that I did. However, through education, I found that I could often ease the unnecessary additional suffering caused by misinformation and misunderstanding. And there was a lot. Because why would someone have prior knowledge about this end of life stuff? That is, unless you are extremely proactive and reading this blog post right now. In the hopes of preventing undue suffering, I thought I would share some of the greatest misperceptions about hospice care that I encounter:
“Hospice is a place”
Hospice programs provide care and support wherever the person calls home: their house, apartment, assisted living, group home, daughter/son’s house etc. There are some programs that also have inpatient hospice units commonly called a "hospice home" or "house". Not every program has these facilities. I like to describe them as “the emergency room of hospice”. That is, a patient is appropriate to go there when symptoms are so bad they need hospital level care. Examples are: uncontrolled nausea, extreme pain, extreme agitation – symptoms that can't be resolved by a nurse visit to the home. Much like an emergency room, once your symptoms are managed, you will be discharged to a lower level of care i.e. wherever you call home or assisted living or a skilled nursing facility (nursing home). Needing assistance with bathing or being bed-bound are not symptoms that warrant this higher level of care.
A very small percentage of patients will spend time in inpatient hospice care. Most common symptoms of the dying process can be effectively managed at a person's residence. Occasionally these facilities may have a few beds where patients can stay a few weeks to months at a time but these are typically under very special circumstances. An even smaller percentage of patients will stay in this type of setting. I prefer to be upfront with people about this reality as it can be a great source of stress for a family to be told they can't stay at a hospice home when they had planned otherwise.
“Hospice is a place run by the government”
Just as there are private and non-profit hospitals, there are private and non-profit hospices. Many operate out of one area, though some are nationwide. Medicare has a robust hospice benefit and other plans can vary by private insurance. Typically hospices that are non-profit will provide care regardless of a patient's ability to pay (due to lack of insurance or lack of coverage provided by their insurance).
“Hospice is a place run by the government for when you are actively dying”
I’ve witnessed how difficult it can be for a person to make the decision to start hospice. I don’t want to minimize how hard this decision can be. However even if they are appropriate for referral, I often find that people are ambivalent because they believe hospice "is for when you have a week to live”.
In order to be eligible for hospice, a physician needs to sign a Certificate of Terminal Illness (CTI) stating that, if the person’s disease were to run its full course, this person has 6 months or less to live. There is a process of re-certifying to keep a person on hospice for as long as they appear appropriate (showing definitive signs of decline/need) even past those 6 months. I worked with patients who still left the house or were still taking care of themselves on their own.
As long as person’s goals match up with those of hospice (comfort focused, end of life care) and their doctor signs a CTI, it can be beneficial to begin hospice services before the last days of life. By having hospice on “early”, the patient and family can build rapport with their assigned team before medical needs increase. The team can provide proactive teaching and planning in order to minimize chance of crisis. And finally, a person with a terminal illness can hopefully have as good of quality life as possible – meaning – their symptoms are managed as well as possible, any concerns have been proactively addressed, and they feel prepared and supported in the face of the unknown. You are never committed to, or stuck with hospice. You always have the right to revoke your benefit, to stop hospice services and to go back to your former insurance coverage for needs related to your disease.
“Hospice is a place run by the government for when you are actively dying and they drug you up”
Actually, one of the first things that is done for a new patient is a medication evaluation. I met many patients who after years of seeing doctors were on handfuls of medications that typically comprised their “breakfast” rather than actual food. A physician will look through already prescribed medications to see what is actually beneficial at this time of life and may even suggest stopping some. Often patients were pleased to take less pills, contributing to increased quality of life. The hospice team asks questions like, “what does quality of life look like for you?” “What does it mean to have your discomfort managed?” “On a scale of 1-10 what do you want your pain to be?” The patient drives the plan of care. Yes, when a person is going through the actively dying process, their symptom management needs may require medications such as morphine. The person may also be more likely to naturally display signs and symptoms of the dying process such as withdrawal, lethargy, and unresponsiveness. The team can explain these symptoms to ease any misunderstandings or fears.
“Hospice is a place run by the government for when you are actively dying and they drug you up and they stay with you 24/7”
I’ve found that people from different states have had very different experiences with hospice services. So I can only speak from the perspective of hospice in NC. But unless the person is in an assisted living or nursing home, or pays privately for hired in-home care, it is the family/friends who provide 24 hour care for the patient. This can be the hardest need to meet. You often don’t know if the person will need 24 hour care for days, months or years. It is helpful to begin thinking about what needs can be met, where, and at what cost. The social worker on the team can help you figure out how to best utilize community and private resources.
Let’s replace those misconceptions with reassuring facts:
Hospice care is…very comprehensive.
If you have Medicare Part A the following is covered (private insurance coverage will vary):
- Medications hospice deems necessary for symptom management (could include medications for pain, anxiety, agitation, etc.)
- Equipment needed in home or facility (hospital bed, walker, oxygen, etc.)
- Supplies (incontinence supplies, gloves, wipes etc.)
- Nursing services on call 24/7 (can instruct over the phone or come out to home if symptoms warrant a visit)
- Caregiver respite every few months (depending on hospice) typically 5 night stay in facility
- Interdisciplinary team that visits: nurse, social worker, chaplain, CNA, volunteer
- Nurse – Typically 1 to 2 routine visits per week. During these visits a nurse will:
- Review medications and order refills, discuss any needed changes with attending physician
- Review symptoms and assess for new symptoms of decline
- Provide A LOT of ongoing education to patient and caregiver on future symptoms of decline to expect and how to manage current symptoms
- Social worker- Depending on needs they may routinely visit 1-4x month:
- Provide ongoing education to patient and family
- Help patient/family process thoughts/feelings related to illness and grief
- Facilitate family meetings or conversations about decision making
- Help find resources for private care, moving to facilities, volunteers etc.
- Educate about advanced care directives
- Chaplain – Depending on patient needs or preference may not visit at all or about 1-2 x month:
- Can help address any spiritual distress and provide emotional support
- Offer prayer to patient or family members
- CNA (Certified Nursing Assistant) - Depending on needs may come out anywhere from 2-7 times per week. These visits are only meant to complete tasks ordered in the care plan such as:
- Bathing patient in bed or assisting them in the shower
- Brushing teeth, combing hair
- Volunteer – Volunteers are a large part of hospice although what they offer will vary by program.
- Take patient to run errands
- Complete shopping or errands for the patient
- Sit with the patient to provide respite to the caregiver (typically 1-3 hours a time)
- Provide social support to patient or alternative supports such as pet, art, or music therapies
- Nurse – Typically 1 to 2 routine visits per week. During these visits a nurse will:
If you are a SAS employee or family member and would like to discuss hospice or any other care-giving questions or needs, please contact the Work/Life Center.
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