How to choose palliative* and hospice care
What is right for your loved one?
*Aso called supportive care
Two options: Commonly Confused
The terms “palliative care” and “hospice care” are often used interchangeably. And sometimes, palliative care is so misunderstood, that it is bypased altogether for people those managing a long-term disease who could benefit greatly from its supportive care.
It’s important to know which type of care is appropriate and beneficial for your loved one’s special circumstance and their quality of life needs and wishes.
Is Palliative Care the right choice right now?
Things to consider and resources to help you
Palliative Care is not well understood by medical providers. In fact, it is often “lumped in” with hospice care and thought of as strictly for end of life.
In fact, palliative care provides supportive care to anyone managing a long-term disease that is likely terminal, but more than 6 months away.
Ideally, palliative care should start at diagnosis. Studies have shown that early, supportive palliative care extends life and provides better quality of life. Palliative care is also “all about” good conversations covering everything from managing the daily needs of managing a serious medical condition, to sharing “bucket list” goals and dreams. They often use the excellent model for such conversations offered by 5 Wishes.
Palliative care can also be a “quarterback” for care, providing relief to family members who may be trying to help in that role, but feel overwhelmed or not equipped to provide intense support for their loved one.
Only for seniors
Only for end of life
Only available and offered in hospitals
Only for those without family (family should be able to manage care on their own)
Insurance doesn’t cover
Wishes and needs:
Conversations that matter
Diagnosis of a serious or terminal disease often inspires new thoughts and goals for how to live a last chapter in life with quality of life. This is a time for good conversations to help support your loved one live comfortably with peace of mind – however “peace” is defined by them.
Some topics to cover…
Preference – care at home? Hospital? Elsewhere?
Help with the activities of daily living? (Which ones?)
Help with pain management? Help with other medication management?
Emotional support? Spiritual support?
Social support: discussions with family and friends
Help coordinating medical care? Help with documents needed, such as Advanced Directives, Medical Power of Attorney
Any special medical equipment? Or other kinds of aids for daily living?
Help with insurance benefits and payment? (Worries about cost?)
What else? (Pick up ideas at 5 Wishes.)
Is Hospice Care Needed?
Things to consider and resources to help you
When someone is facing the last 6 months of life, hospice care offers the kind of TLC anyone would want to help ease pain, suffering and declining abilities. Too often, hospice care is brought in only in the last few days of life, mainly because there is widespread confusion about the care provided and its benefits to patients and their families.
- With any diagnosis leading to death, it’s important to have good conversations with doctors and others on your loved one’s care team because two doctors will be needed to certify when someone has 6 months or less to live. When they do so, insurance providers will cover the cost of hospice to some degree (this varies by policy.)
- Hospice care can be provided in-home, in-hospital or in a “hospice house”, always by Registered Nurses working with Case Managers and Social Workers, and overseen by a physician medical director. As needed or wanted, someone from the person’s religious affiliation will be included in hospice care, as well.
- Pain management is very important to end of life care, and this will guide the schedule of care with nurses.
When someone lives beyond 6 months, doctors may request an extension. Extensions can be filed several times, and this is common for those declining from dementia, which has an uneven and, sometimes unpredectable, course.
Some insurance policies for hospice also cover:
- Respite care for families, and
- Bereavement services after their loved one’s death.
- Giving up on life (prematurely), hope gone, “waving the white flag”
- Only for the last few days of life, when life is clearly ebbing away
- Only for hospital care
What does your loved one need?
Care at home? Or, in hospital care? Or, in a hospice house?
Help with daily living activities? (Which ones?)
Help coordinating medical care?
Help with completing medical care documents, such as Advanced Directives, Medical Power of Attorney
- Your insights as an advocate/insider info
- Bio-ethics review
- Other? (Cost?, insurance or Medicare benefits?)
How to Choose Palliative & Hospice Care Providers
Quality, Safety, Fit for Your Loved One’s Needs
Not all providers are created equal. Like any other service, there is wide variablity in quality and range of services.
Use these questions to compare “apples to apples” among the services in your area. If possible, try to call three (or more). Ask your friends for recommendations, too!
What you want
- Only Licensed Registered Nurses (RNs) administering medications
- A licensed docotor (MD) overseeing all medication administration and decisions.
- A choice: some long-term care facilities have “captive” or “in-house” hospice providers. You don’t have to use them. You may hire your own.
Questions for every palliative or hospice care provider you’re considering:
- Do you provide…
- Care in home?
- In hospital?
- In a hospice house?
- What are your pain management policies and procedures?
- Who admisters pain management and other medications? (Their licences.)
- Do you offer any help with daily living activities? (Which ones?)
- Do you coordinate with family for emotional support?
- Do you coordinate with religious groups for spiritual support needed.
- Who oversees the medical care? (Credentials)
- Do you offer help with completing medical care documents, such as Advanced Directives, Medical Power of Attorney
- What services are included?
- How are your services billed?
- What is your company’s philosophy regarding the palliative care approach?
- Do you have experience with this disease/disorder?
- Do you provide consistent hospice nurses and caregivers, or will my loved one have different providers caring for him/her?
- For at-home hospice care, what is your on-call program in case assistance is needed during the night?
- What is your company’s philosophy regarding hospice care? How involved is the family be in your hospice care program?
- What patient/family education resources do you offer? May I see a sample, please
Frequently Asked Questions
Task Force Team!
OUR NEXT STEPS:
- Please reveiw the notes we’ve collected, shown below the form. (There are more notes on our Trello board you may want to look at, too.)
- Then, share your thoughts on the form below.
NOTE: All input received by February 1 will be assembled into checklists that we will review and finalize at our next meeting on February 8th.
What is Palliative Care?
- Description of services
For whom: diagnosis of terminal disease, out of treatment/cure options
- NOT end of life, more than 6 months ahead
- Palliative team: quarterbacks of care
- For Symptom and pain management (doctors are not good at this, generally — more treatment focused)
- In the ideal world, starts at diagnosis
- When early conversations occur, and supportive care is provided, patients live longer, better quality of life
- Conversations should include patient education and decisions around their desire for pharmacy vs. non-pharacy pain management
- 2 types: home care and Inpatient care
- Hospitals may have palliative/supportive care teams but typically brought in very late and hospice is usually on their minds
- When home-based, usually nurse practitioner visits on a schedule that seems to be mutually determined by patient, service and family/caregivers. NP may be certified
- Overseen by a licensed certified Social Worker who (ideally) intiates 5-Wishes types of conversations — should not be “one and done”. It’s a process. Lots of comunication: end of life docs put in order
- Also involved, doctors and chaplain/ministers/ — but probably up to patient(?)
- Pain manageent is a goal (part of symptom management), med administration
- Other Benefits?
Medicare covers 80%, balance covered by supplement or patient out-of-pocket (Medicaid coverage?)
Private insurance — but some payers don’t even know their own policies or coverages!!!! Need to dig, go to sr. sources at payer organizations if you get a “no”
For 3 years?
No coverage of equipment or meds
Many docs don’t like, don’t understand. Until about 2012, no classes on this in med school, and now, just barely covered.
Perceived as being for older people, but for all ages.
Diagnosis codes are either non-existent or murky for use when ordering palliative care when submitting for insurance coverage.
NO STANDARDS of CARE: That’s why our checklists are important! List of quality and accountability criteria.
What is Hospice Care?