What You Should Know About This Important Care Option
When a loved one is facing a life-limiting illness or condition, it can bring on an overwhelming flood of emotions, fears, and troubling thoughts for both the patient and family members. After all, this is uncharted, uncomfortable territory for most of us. Fortunately, thanks to a service called hospice, no one has to face life’s final journey alone.
When doctors determine a cure is no longer possible, or a patient decides to stop curative treatments, hospice can step in to provide pain management and comfort care that allows a terminally ill patient to enjoy as much quality of life as possible. Hospice also focuses on helping family members deal with the death and loss of a loved one. It’s a truly holistic approach that gives everyone involved the chance to make this final passage more meaningful and family-centered.
Hospice care is often provided in the patient’s or family member’s home, but there are circumstances where that’s not possible or not desirable. Some terminally ill patients require round-the-clock nursing care or have complex pain management needs. And sometimes, the memory of a loved one passing in the home is too much to endure. In such cases, hospice care can be provided at an inpatient center. Here in Dallas for example, Faith Presbyterian Hospice offers care at home or at The Pickens Center, an in-patient hospice center.
Since the hospice program was instituted by Medicare in 1983, more than one million terminally ill patients in the United States receive hospice care annually. Amazingly, many people are still unfamiliar with hospice or have misconceptions about it. Compounding the problem, doctors often wait to recommend it until a patient’s final few days (hospice care can begin when life expectancy is six months or less), leaving family members to deal with tremendous stress and unnecessary expense.
Faith Presbyterian Hospice believes families must become more proactive about when and how to use hospice care, and that begins with having all the facts:
Why is hospice important? Life is precious, right down to its last moments. This is the time when quality of life, dignity, comfort, even laughing together, means everything. During these final months, weeks or days, the warmth, care, and support a hospice provides to patients and family members can make all the difference.
Where do patients receive hospice care? Hospice care is most often provided at home, but it can also be provided at free-standing hospice centers, like The Pickens Center, or on hospice-designated floors in many medical and nursing home facilities. In a home setting, all needed hospice care is provided by trained staff. The primary caregiver, which could be a family member or a community resource if no family is available, can also be trained to assist.
Who qualifies for hospice care? Hospice patients have a variety of life-limiting illnesses, diseases and conditions, including cancer to neuromuscular diseases, Alzheimer’s, end-stage renal disease, and many others. That said, all hospice patients have one thing in common: they have a life expectancy of six months or less.
Who will provide my hospice care? Hospice care is provided by a team of people that includes registered nurses, doctors, social workers, spiritual care counselors, bereavement counselors, and trained volunteers. The primary caregiver (typically a spouse, adult child or hired caregiver) is also a key member of the hospice care team and is included in all care decisions and team meetings.
What are some typical hospice services? Hospice takes a holistic approach to patient care, so it includes an extensive combination of physical, emotional, and spiritual care and social services:
- Direct Care. In-home nursing care as well as 24/7 phone access to hospice staff to help caregivers with questions and issues day or night.
- Medical Supplies. Provision of all pain control medicines, medical supplies, and medical equipment related to the illness. Medicare patients receive these for little or no charge, depending on their coverage.
- Hygiene. Assistance with activities of daily living like showering, toileting, etc. — the activities that help patients maintain their dignity and feel “more human.”
- Spiritual Care. This service is for both the patient and family members to help sort out the difficult questions of death and dying that we all have.
- Home Help. Volunteer services that arrange for community volunteers to assist with to-do’s such as grocery shopping, meal prep, and house cleaning, as well as providing a social outlet for both patients and family members.
- Adjunct Therapies. Additional supportive therapies such as Music Therapy, Certified Massage Therapy, and Reiki Stress Therapy have all been proven to be emotionally soothing and help with pain control and stress relief.
What kind of pain control can hospice provide? Perhaps the most frightening and difficult aspect of having a life-limiting illness, disease or condition is the accompanying pain, especially in the last weeks and days. Balancing pain and symptom management while ensuring that the patient can be “present” with loved ones during this precious time is what hospice does best.
The nursing staff and doctors are experts in using state-of-the-art pain therapies and pain control alternatives to achieve comfort rather than sedation. Many of today’s drug administering equipment can be installed at home and family members can be trained to use them, reducing the need for placing loved ones in an inpatient hospice facility.
How do family members of the patient benefit from hospice? The hospice concept is “family-centered.” As such, the primary caregiver (often a spouse or adult child) is considered a member of the hospice team and participates in regular meetings to discuss the patient’s condition and care. Hospice staff will also take the time to teach the primary caregiver how to confidently administer medications and use medical equipment, both of which can be stressful responsibilities.
But there’s more. Hospice recognizes that family members also deal with their own forms of pain, stress, grief, and confusion about dying and death. This is why hospice services also include emotional support, especially after a loved one’s death, when bereavement services and spiritual counseling are most needed.
Additionally, many hospice programs include an option for respite care, where a temporary caregiver steps in for a few days to let the family have a break from the rigors of caregiving.
What is the difference between hospice care, palliative care, and respite care? There’s often some confusion between these terms. Both hospice care and palliative care focus on reducing pain and increasing patient comfort. The difference is that palliative care can be utilized at any stage of an illness to help a patient feel better, while hospice care is given when all curative treatment ceases and the patient has a life expectancy of six months or less.
Palliative care and hospice care are often coordinated but administered by separate teams. Respite care is a service of many hospice programs where a temporary caregiver is brought in to allow the primary caregiver, usually a spouse or adult child, a break from their responsibilities (generally up to five consecutive days are allowed at a time).
What will hospice care cost? In many circumstances, hospice care is provided at little or no cost to patients thanks to the way it was designed by the government. Here are the ways your hospice care can be covered:
- Medicare. A Medicare Hospice Benefit is included in Medicare Part A and services will likely be at no cost if you have a prognosis of six months or less and agree to receive comfort care and no further curative treatment. You may have a small copayment for prescription medications and pay a small percentage for respite care if you choose to have it. Room and board is not covered if you receive care in a facility such as a nursing home. See https://www.medicare.gov/coverage/hospice-care for further details.
- Veteran’s Benefits. Your VA benefits include a Hospice Benefit to qualified Veterans who are in the final phase of their lives, typically six months or less. This multidisciplinary team approach helps veterans live fully until they die. The VA also works very closely with community and home hospice agencies to provide care in the home and can be provided at home, in an outpatient clinic or in an inpatient setting. Contact your VA administrator for further details.
- Medicaid. The Hospice Benefit is an optional state plan service offered through Medicaid. To use it, individuals must elect the hospice benefit by filing an election statement with a particular hospice. They must also acknowledge that they understand that other Medicaid services for the cure or treatment of the terminal condition are waived. You can revoke the election at any time and resume receiving your Medicaid-covered benefits. See https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html for further details.
- Private Insurance. If you don’t yet qualify for Medicare, your private insurance may have some coverage options, so check with your carrier for more details.
- Options for Uninsured Patients. Some hospice programs put the grant money and/or donations they receive into special funds to help uninsured patients. Using these funds, they may be able to offer services at a reduced cost or at no cost, based on your ability to pay. Don’t hesitate to ask about this option.
Is hospice the right decision for myself or a loved one? Beyond the requirements associated with qualifying for hospice (a life expectancy of six months or less, decision to accept comfort care rather than curative care), it’s also important to consider the emotional value of choosing hospice.
A great deal of stress and confusion is experienced by both the terminally ill patient and the caregiver. When time together becomes limited, that time is especially precious. With hospice overseeing the medical and comfort care, it’s much easier to focus on sharing, which can be some of the best and meaningful moments of your lives together.
Want to learn more about navigating life’s final passage together? Visit our family resources page for more information.