Decisions about care at the end of life are complicated and often emotionally charged. Many of us have heard of hospice care, but what hospice care is and when it should be started are very commonly misunderstood.
For older adults who are seriously ill or have a terminal diagnosis, having difficult conversations with loved ones and healthcare providers can help relieve the stress and confusion that can happen at the end of life. Knowing your options, understanding the role of hospice and palliative care, and making decisions ahead of time can ensure your wishes are met when this time arrives.
This National Hospice and Palliative Care Month, we’re taking a closer look at hospice care and what choosing it could mean for you and your loved ones at the end of life.
What is hospice care?
To understand hospice care, it’s first helpful to understand what hospice care is not. One of the most common misunderstandings about hospice is that it is a place. Although hospice facilities do exist, hospice is a service that can be delivered anywhere a person lives. This includes in the home, in long-term care facilities, in the hospital, and more.
Hospice is also not a type of care that is meant to hasten the dying process. In fact, people receiving hospice care live on average 29 days longer than those who do not. 1 Hospice care focuses on quality of life and symptom relief for people with a life-limiting illness, supporting them and their families in enjoying life and each other during the final part of their lives.
Who can receive hospice care?
As a Medicare-covered benefit, there are eligibility rules that apply to hospice care. According to the Centers for Medicare and Medicaid Services (CMS), people who wish to enroll in hospice must meet these criteria: 2
- Their primary physician and a hospice physician certify they most likely have 6 months or less to live
- They must receive care from a Medicare-certified hospice
- They must elect to receive the hospice benefit only, and cannot receive payments from Medicare for the terminal illness or related conditions (this means treatment cannot be curative)
- They must have a personalized plan of care, developed by the hospice team with input from the person receiving care and their family.
It’s important to note that hospice care eligibility can (and must) be recertified by a hospice physician or hospice nurse practitioner based on a 90 and 60-day recertification schedule set by CMS. Some patients can and do receive hospice beyond the initial 6-month time frame that was estimated when hospice care was started.
What kinds of services will I receive if I accept hospice care?
Hospice care covers a broad range of medical and supportive care that is tailored to each individual’s needs and wishes. These services include the following: 3
- Skilled nursing- this is licensed medical care provided by a nurse, and includes services like intravenous and injectable medication, tube feedings, catheter and wound care, assessment of your condition, and care planning.
- Skilled therapy- physical therapy (PT), occupational therapy (OT), and speech therapy can improve symptoms and/or help you with activities of daily living so that you can have better day-to-day functioning.
- Medical supplies and durable medical equipment (DME)- dressings, catheters, oxygen delivery devices and tanks, hospital beds and more as needed to support your treatment.
- Medications- all prescription medications needed to manage symptoms and improve comfort while enrolled in hospice are covered with a $5 copay, including pain medication.
- Hospice aides- visits from a certified hospice aide to help you with bathing, dressing, toileting, and some light housekeeping like changing bedding, if needed.
- Respite care- while enrolled in hospice, this means you can spend up to 5 inpatient days at a time at a hospice facility so your caregivers can tend to other responsibilities or rest.
- Inpatient care- in situations where medical care and pain control cannot be managed in a home setting, patients can receive short-term care at an inpatient hospice facility.
- Social services- if ordered by your doctor, hospice social workers can help you find resources in your community to help with needs, or help to address social and emotional concerns related to your diagnosis.
- Spiritual or religious counseling- hospice chaplains and other religious counselors can help families grappling with concerns related to spiritual or religious needs at the end of life.
- Nutritional counseling- assistance with appropriate choices to address dietary needs, which often change at the end of life.
How do I know when to choose hospice care?
Common diagnoses often seen in people who choose hospice care are cancer, heart disease, and advanced dementia or Alzheimer’s. 4 These serious illnesses, along with others like chronic obstructive pulmonary disease (COPD), Parkinson’s disease, end-stage renal disease, and others, may worsen over time despite treatment efforts.
Electing hospice care is a difficult choice, and often not clear for people who are seriously ill- or for their loved ones. Very often, hospice care is only chosen very close to the end of life, meaning people may miss out on weeks or months of the supportive care and improved quality of life that hospice can offer.
The National Hospice and Palliative Care Organization (NHPCO) reports that out of Medicare patients enrolled in hospice: 5
- 10% received care for 2 days or less
- 25% received care for 5 days or less
- 50% received care for 18 days or less
So how do you know when to choose hospice care? There are some key signs you can look for that can alert you that it may be time to discuss this option with your loved ones and healthcare providers:
Treatment is not working, or the person expresses decreased interest in treatment
If the illness and symptoms of illness are worsening despite treatment, it’s important to ask your doctor whether they expect the condition to improve or resolve. Often, medical care focuses on curing or controlling a disease, and difficult conversations about the outcome don’t happen.
When treatment is not working, people may express that they are tired, say they do not want to pursue any more treatment, complain frequently about discomfort, or talk about wishing for more time with family. Hospice can address all of this.
Visits to the doctor or hospital are increasing
Ongoing complications and unexpected medical concerns related to the diagnosis, along with uncomfortable symptoms, may mean seeking medical care with increasing frequency. This often includes frequent infections. If it seems like you’re always at the doctor’s office, emergency room, or admitted to the hospital, is the treatment working? Are frequent hospital stays contributing to your quality of life?
Symptoms related to the illness are increasing
Pain, nausea, vomiting, shortness of breath, confusion, anxiety, and restlessness are all signs that symptoms related to a life-limiting illness are uncontrolled. This can also be a sign that treatment is not effective, and that the priority for care is unintentionally focused away from quality of life.
Appetite is decreasing, and there is unintended weight loss
If someone seems to be forcing themselves to eat, or is eating much less than usual, this is a common symptom of advanced illness at the end of life. Our bodies process nutrition differently during a life-limiting illness, and weight loss can often occur.
Sleep is increasing, and the person seems withdrawn
At the later stages of a life-limiting illness, the body needs more rest, and people may sleep all or most of the day. If a person seems to be increasing the length and frequency of naps, and decreasing participation in daily life and conversations, it’s worth talking about what goals of treatment are most important to them.
Caregivers feel overwhelmed
As a person experiences increasing symptoms, weight loss, more frequent visits to the doctor, and other concerns, caregivers may notice their own stress levels increasing. Managing care can become more complex and overwhelming. If a caregiver is feeling the need for extra support, this can suggest hospice care would help improve quality of life for all involved.
What if I change my mind about hospice care?
Health challenges can be unpredictable. A common concern about hospice care is whether the decision to elect hospice is irreversible. It may be reassuring to know that choosing hospice is not a permanent decision. Sometimes, circumstances can change, for example:
- A new treatment becomes available for your condition and you want to try it
- Your condition improves and you decide to resume more aggressive treatment again
- You want to elect care in the hospital for a problem not covered under hospice benefits
- You just don’t want hospice care anymore
If this happens, you can revoke your agreement to receive hospice care, and resume your regular Medicare benefits. And, you can re-enter hospice care at a later time. You can also opt to receive palliative care until you are ready for hospice care again.
What is palliative care?
Palliative care involves specialized medical care for people who are living with a serious or life-limiting illness. It can be a part of hospice care, or it can be used by people at any stage of illness, even if the goal is to cure the illness. 6
There are different rules for coverage of palliative care services outside of hospice care, so you’ll want to discuss this with your insurance provider if you are receiving it as a standalone service. But palliative care can provide valuable support with things like symptom management, quality of life, and coordinating care with all of your healthcare providers so your goals and wishes related to care are honored.
Choosing hospice care can enhance your life
Ultimately, the decision to choose hospice care is different for each person and each situation. Understanding your options, and having discussions with your healthcare team, family, and other loved ones can help you make the right choice for you.
If you are receiving hospice care at home, and need additional support in your home with personal care, activities of daily living, and light housekeeping, it’s important to know that hospice care is not continuous 24-hour care. The only exception for this is during a medical crisis such as an episode of uncontrolled pain.
This means that outside of on-call and scheduled nursing and nursing aide visits (known as Routine Home Care), you may choose a professional caregiver service to provide additional care in your home. Routine Home Care is used for 98.3% of hospice care provided, according to the NHPCO. 7
No matter when or where you receive it, choosing hospice care can enhance your life and give you quality time with loved ones during an otherwise challenging time of life.
Caresify’s expert caregivers can help with a personalized plan of in-home care to support you throughout your hospice care. You can read more here, or call 888-799-5007.
References
- https://pubmed.ncbi.nlm.nih.gov/17349493/
- https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice
- https://www.medicareinteractive.org/get-answers/medicare-covered-services/hospice/hospice-costs-and-coverage
- https://www.nhpco.org/hospice-facts-figures/
- https://www.nhpco.org/nhpcos-new-facts-and-figures-report-shows-changes-in-hospice-patient-diagnoses/
- https://getpalliativecare.org/whatis/
- https://www.nhpco.org/nhpcos-new-facts-and-figures-report-shows-changes-in-hospice-patient-diagnoses/
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