Deciding if it’s time to place a loved one on hospice care is one of the most painful decisions any caregiver will make. After my mom broke her hip, she was put on heavy pain medication. I sat by her side for two weeks and witnessed her hallucinating about bugs flying in the air and seeing dead family members visit her. I thought they were coaxing her to follow them. I believed that she was dying, and her doctor advised me to consider placing her on hospice care. After talking it through with my brother, we agreed that this was the best thing to do.
Well, it ended up not being the best thing. The hospice team was giving her too many meds and my mother was dying from lack of hydration and food because her hospice caregivers were “snowing” her. They gave her too many pain meds and not enough liquids. She slept round the clock and didn’t wake up to eat or drink. When the private caregiver I hired me alerted me to what was going on, I took my other off hospice. She bounced back and lived another couple of years. She never walked again, despite making a whole hearted effort (that’s another story) and welcomed three great grandchildren into the family.
Several years before my mom died, she placed my dad on hospice care. He had an entirely different experience. The hospice team attentively provided care that my mother was incapable of, and he died with dignity.
The day my husband’s doctor suggested that I consider hospice care was a hard one. But I knew that his illness was terminal, and welcomed the extra attention and care that he would receive. At the very end, the loving and tender care that the hospice team showed him and me and my adult children was significant and so appreciated. They provided us with food and beverages, and aromatherapy cream to massage his legs and feet.
Whether your patient has a terminal illness, is getting toward the end of life, or is suffering from acute and painful symptoms, it’s important to know the difference between palliative care and hospice.
Palliative care is an umbrella of comfort and quality of life care which includes hospice care. It isn’t just used at the end of life, but can be very beneficial when the goal is complete healing and cure. Palliative care is not only end-of-life care. It can be used anytime during the course of an illness.
Defined by the National Hospice and Palliative Care Organization, “palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”
The following points characterize palliative care philosophy and delivery:
- Care is provided and services are coordinated by an interdisciplinary team.
- Patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs.
- Services are available concurrently with or independent of curative or life-prolonging care.
- Patient and family hope for peace and dignity are supported throughout the course of illness, during the dying process, and after death.
Any individual with a serious illness, regardless of life expectancy or prognosis, can receive palliative care. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from these services.
Patients receive the following palliative services in any care setting:
- pain and symptom management
- in-person and telephone visits
- help navigating treatment options
- advance care planning and referrals to community resources.
Hospice care provides comfort through the end of life when the individual has a terminal prognosis and no further curative treatments are pursued. Hospice care focuses on the pain, symptoms, and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of 6-months or less if the disease runs its natural course. This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.
Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.
It’s important to know that even if someone is placed on hospice care, s/he may be kicked off after the six-month period if their health improves. Sometimes it’s just a matter of that person beginning to eat and gain weight instead of refusing food and losing weight. An individual might go off and on hospice several times.
Patients receive the following services in most care settings including home, hospice facility, skilled nursing facility, long-term care facility, assisted living facility, hospital (inpatient levels of care only), group home:
Pain and symptom management
- 24-hour on-call service
- in-person visits
- medical equipment
- related medications
- inpatient care
- continuous care in the home
- respite care
- volunteer services
- spiritual care
- bereavement and counseling services
What you need to know about hospice
To initiate the process, a consultation for hospice and/or palliative care is initiated by the primary care physician or specialist, the patient, or a family member. The consultation is important to provide the patient and/or family with the services provided, as well as to verify that the patient qualifies for the services based on their current health status. If the person qualifies and desires the services their care provider issues a medical order. The hospice or palliative care provider then assigns an RN as the case manager who conducts an assessment of the patient. The patient’s needs are identified and a care plan is created.
- Hospice does NOT provide round-the-clock caregivers.
- If the patient gets better and gets off hospice care, s/he might re-qualify for services if they are needed in the future.
- The patient doesn’t have to go off all their medications. For instance, if it’s flu season, and especially if the patient is in a care facility, s/he will probably still get a flu shot to reduce risk of getting sick and getting others sick. If the patient is on quality of life medications, those can be continued, as well as pain management medications. For the patient who has been on thyroid medications for decades, s/he will remain on those medications.
- If the patient is uncomfortable with the visiting nurse or CNA, who usually provides personal hygiene a couple of times a week, a new visiting nurse health aid can be provided. The nurse coordinates the patient’s care plan so it’s important that the patient is comfortable with this person.
- Hospice usually provides the following supplies: bed pads, adult diapers, wipes, barrier wipes/paste, non-latex gloves, wheel chairs, commodes, pressure pads, walkers, shower and transfer benches, air mattresses, hospital beds, bedside tray tables.
You will probably have a choice between a non-profit and for-profit hospice. Consult first with Medicare and your additional insurance provider or with Medicaid to see what is covered and which hospice affiliates they recommend. The Medicare Hospice Benefit pays all related costs associated with the care that is related to the terminal prognosis as directed by Centers for Medicare and Medicaid Services (CMS). Most private insurers have a hospice benefit that pays all related costs associated with the care related to the terminal prognosis. In most states Medicaid pays all related costs associated with the care related to the terminal prognosis as directed by CMS. In all cases, there may be some medications, services and/or equipment that are not included in the Medicare, Medicaid or individual’s policy, so don’t assume anything. Always ask.
Please remember that the more help you have in caring for your loved one, the more comfortable it will most likely be for you and your patient. This is usually one situation in which the adage “too many cooks in the kitchen spoil the stew” doesn’t apply. The more people you have on your caregiving team the better. And if your loved one has a terminal illness, the sooner you research hospice and palliative care the better. Don’t wait until an emergency arises and you are in a panic about helping your loved one. Don’t do it alone. Get help.
Blessings to you and your family.
Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store, Indie Bound.org, and many other fine independent bookstores, as well as public libraries.