How to choose palliative*
and hospice care

What is right for your loved one?

 

*Also called supportive care

 

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Two options:
commonly confused

The terms “palliative care” and “hospice care” are often used as if they were the same. They are not.  Each is valuable in its own way.

Think of palliative care as supportive care — help for anyone managing a serious or long-term disease.

Hospice care is also supportive care, but hospice offers additional services tailored to meet the needs of people living out their final months.

Supportive care decisions are best guided by all of your loved one's needs and wishes — physical, emotional and spiritual.

What are my loved one’s wishes and needs?
Conversations that matter.

Diagnosis of a serious, long-term or terminal disease often inspires new thoughts and goals for how to live with quality of life.  

This is a time for good conversations to help support your loved one move forward comfortably with support care that offers peace of mind to them, and often, to their families, as well.

Don’t know where to start? Check out Five Wishes for helpful ideas.

Great resources for great conversations.

Some discussion ideas:

  • Hopes, goals, and dreams… bucket list?
  • Preferences about where to live? Any changes?
  • Help needed with daily living activities or responsibilities?
  • 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 needed? Or other kinds of aids for daily living?
  • Help with insurance benefits, medical bills, payment? (Worries about cost?)

Is supportive palliative care the right choice?
Right now?

Things to consider and resources to help you.

Palliative care is not well understood by medical providers.

Often “lumped in” with hospice care, it’s thought of as strictly for end of life. Let’s clear this up!

Palliative care supports anyone managing a serious disease while undergoing treatment. If a disease reaches a point that it can no longer be treated or cured, then hospice care – with additional support services – may be initiated as an extension of palliative care.

It is also a misperception that palliative care inevitably leads to hospice: modern medicine has amazing curative resources! Palliative care helps support anyone going through that often difficult journey to a cure.

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. An excellent model for such conversations is offered by 5 Wishes.

As needed, a Palliative care provider can 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 that level of support for their loved one.

The main goals for palliative care support are pain management, emotional and mental health support, care coordination and nutrition. Coordination of family and social support are also provided as needed.

COMMON MISPERCEPTIONS

    • Only for seniors 
    • Only for those near death
    • Only for those with a terminal disease
    • Only for those who don’t have family who can provide daily care
    • Only for those in hospital
    • Expensive
    • Insurance does not cover
Palliative care can help with medications, supplies, coordinating care – anything that helps patients and families cope with serious illness.

Who is supportive palliative care suited for?

Some of the most common diseases for which supportive palliative care is available include (but are not limited to):

    • ALS (Lou Gherig’s disease)
    • Cancer
    • Congestive heart failure
    • Kidney disease
    • Lung disease
    • MS
    • Parkinson’s disease

Note: There are many others. Does a disease limit one’s life? If so, palliative care may be right.

Palliative care improves the quality of life of patients with life-threatening illness.  
It’s not only about providing comfort and support, but also creating happy moments—both big and small—to savor together.

What does palliative care cost? Who pays?

The cost for palliative care varies. A lot depends on the  services needed and where the serivces will be provided. In home? In the hospital? At a long-term care facility?

Usually a doctor’s referral is needed, especially for insurance coverage.

Medicare and other insurance will cover at least a portion but that also varies. It’s best to contact your policy’s representative. 

Is Hospice Care Needed?

Things to consider and resources to help you.

When someone is facing the last six months of life, hospice care offers the kind of TLC anyone would want to help ease pain, suffering, and declining abilities.

Unfortunately, due to widespread confusion about hospice care services and its benefits to patients and their families, hospice care is usually sought only in the last few days of life.

That’s why, with any diagnosis that your loved one may have 6 months or so to live, it’s so important to have good conversations with doctors and others on your loved one’s care team to arrange hospice care that will support the best possible quality of life in the time remaining.

To qualify for hospice care, two doctors must certify that a person 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.”

Hospice care is provided by a highly qualified team, led by Registered Nurses working with Case Managers and Social Workers, and overseen by a physician medical director.

Someone from the person’s religious affiliation will be included in hospice care, as well  – whatever will give comfort to the person in care.

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 unpredictable, of course.

Some insurance policies for hospice also cover:

  • Respite care for families, and
  • Bereavement services after their loved one’s death.

COMMON HOSPICE MISPERCEPTIONS

    • 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.
Hospice care focuses on supporting the whole person and closest family with reliable information, kind care and emotional nurturing.

How to Choose Palliative & Hospice Care Providers

Choose a team that’s truly dedicated to putting your loved one’s needs at the center of all they do.

Not all providers are created equal. Like any other service, there is wide variablity in quality and range of services – especially for palliative care which (currently) does not perform services under national guidelines and rules as hospice care does.

Use these questions to compare “apples to apples” among the services in your area. If possible, try to call three (or more). Your friends may have recommendations, too. 

WHAT YOU WANT:

  • Only Licensed Registered Nurses (RNs) administering medications
  • A licensed doctor (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.
  • A provider that’s geared to supporting the family’s caregiver needs and tasks, as well. Sensitivity to “time-out” to restore, refresh, take care of other responsibilities.

Questions for every palliative or hospice care provider you’re considering:

  • Do you provide palliative or hospice care, or both?
    • In home?
    • In hospital?
    • In a hospice house?
  • What are your pain management policies and procedures?
  • Who oversees the medical care? (Degrees? Licenses? Certifications?)
  • Who admisters pain management and other medications? (Their licenses?)
  • Do you have experience with my (loved one’s) disease/disorder?
  • Do you provide consistent hospice nurses and caregivers, or will my (loved one) have different providers caring for him/her?
  • Do you offer help with daily living activities? Which ones?
  • What is your on-call program in case assistance is needed during the night?
  • Do you coordinate with family for psychological or emotional support my loved one may need?
  • Do you coordinate religious/spiritual support that may be needed?
  • Do you offer help completing medical care documents, such as Advanced Directives, Medical Power of Attorney?
  • What other services do you offer?
  • How are your services billed? What will our costs be?  When due? What does insurance cover? Ask about any potential additional costs that may come up.
  • Are there financial assistance programs available?
  • What patient/family education resources do you offer?
download questions checklist now

More Helpful Tips:

  • Some insurance policies for hospice also cover respite care for families, and bereavement services after their loved one’s death.
  • If a call to insurance results in “No,” ask to speak to a supervisor. Sometimes the frontline customer service reps are not up to speed on all their company’s coverages. It can pay to be persistent!

    Additional Resources: