When you say hospice, many people either shut down their listening or cringe at the image they have in their mind.
Many people, particularly older adults, have a belief that talking about hospice could mean your life is over.
People die who receive hospice care, I have heard people say.
That is true, of course, but it isn’t hospice care that’s causing death.
The whole point of hospice is to welcome the eventual death facing us all in the most dignified and comfortable manner we can. Family caregivers still provide the majority of care and staff support them in a variety of ways – physically, emotionally and spiritually.
Very few people want to die in a hospital bed if they have a choice. Most people would rather be surrounded by those who mean the most to them, including their beloved pets, their comfortable bed coverings, their own home and the faces of those whom they have nurtured and who continue to nurture them.
This isn’t restricted to older adults, many young people – very young people including infants – can be served by caring hospice personnel in their own home with their family around them.
The statistics might surprise many of us.
The most recent facts and figures about hospice care come from 2014 from the National Hospice and Palliative Care Organization (NHPCO).
It is estimated that 1.6 – 1.7 million people receive care under hospice annually.
That number has been happily growing each year as more understand the benefits of the services provided.
By 2007, of those who died with Medicare benefits, 30% received hospice care at the end of life.
The median length of service (time spent receiving hospice benefits) in 2014 was 17.4 days; the average length of service was 71.3 days.
About 59% of people receiving hospice, get the care at their ‘home’ wherever they call home, such as personal home, nursing home or residential center. About 32% received care in an inpatient hospice facilty.
What Hospice Can Mean to Your Senior
Hospice care will provide a variety of services for your senior with the talents of an interdisciplinary team.
- Pain control
- Medication management
- Personal care
- Assistance with spiritual care
- Medical supplies and equipment
- Caregiver education
- Special services such as therapy (physical, occupational and speech)
- Respite care
- Volunteer services
These services can make the end of life a much different experience for seniors and their loved ones.
Hospice Staff Support Family Caregivers
Family caregivers may find that they receive as much or more supportive care from electing to get hospice services for their loved one than they might imagine.
Hospice personnel involve family caregivers in the plan for their loved one. The wishes of the care recipient are paramount but helping the caregiver provide care and obtain resources is also a function of hospice.
Social workers can connect families to resources of which they may not be aware for the benefit of the senior, both now and after their death, such as community services. They provide emotional support along the way and for up to 18 months after the death of your loved one. They are skilled at helping you cope with end of life caregiving challenges and then help you heal after care.
Chaplains can support your loved one’s journey as they make peace with their own life, their family relationships and strengthen their faith to face what the future might hold for them. Chaplains also help family members who might be struggling with the “why me” or “what now” questions that could appear as the end of life approaches.
They can help families make peace with what is coming and help find comfort in after care.
Hospice Medical Professionals
Did you know that there are Dietitians in hospice care that can help family caregivers who are needing more assistance to find comfort in food for their loved ones? There are!
Food is a comfort for most people. We show our love through food – baking, cooking and just watching others eat what we prepare.
This doesn’t change at the end of life. What could change are the amount, texture, temperature and choices of food that your loved one might need to find comfort near the end of life. The hospice Dietitian can help you and your family members with these choices.
Most of us know that Nurses and Nurses Aides are the foundation of hospice care and they provide the hands-on care that family caregivers and senior loved ones need. They can offer strategies for caring for your senior that you might not already know which can make your caregiving journey a bit easier.
These Nurses are shoulders to lean on, ears to vent your problems to, and friends throughout this journey. They understand your concerns and will try to make your experience as a family caregiver better and hopefully lighten your load even a little bit.
Cost of Hospice Care
Most families worry about the cost of hospice care in addition to medical costs associated with a terminal illness. According to the NHPCO, hospice care is covered under Medicare, Medicaid, and most private insurance plans.
People receive hospice care regardless of their ability to pay.
Medicare is the primary payer for hospice care and picked up the bill 85.5% of the time in 2014.
Veterans are eligible for hospice care through the Veterans Administration, which partners with community providers. Many hospice providers participate in a program called We Honor Veterans and serve veterans in need at the end of life.
The numbers in need of this service are great, as 1 out 4 dying people in America are veterans.
Some hospices are learning to best serve the special needs of veterans who have unique illnesses or traumatic life experiences that require a modified approach. Considerations include location as many are rural (3 million of the 8 million Veterans), different wars or trauma, homelessness, PTSD, or substance abuse.
Electing Hospice Care
Every person who believes that comfort and dignity are important to them as they face their own end of life, whether they are young or old, should put their desires into writing.
Be sure to discuss your thoughts with your family so everyone knows if you don’t want heroic measures taken — clearly define what you consider to be heroic and what you feel you want done — so they will honor your wishes.
Preparing them to act on your behalf is vital!
Depending on your state, there may be specific forms that need to be completed, witnessed and executed accordingly in case of future disagreement among the family. It is important to create them correctly but also important to share them with those involved so that they can proceed on your behalf.
They won’t be written in stone, so if you change your mind in the future, the documentation can be amended.
There are so many options that you can set forth, not just heroic measures desired or not desired but things that will bring you joy such as:
- Allow my dog on my bed to be with me at the end
- Keep daisies on my bedside table or keep flowers out of my room
- Dress me in my favorite pink nightgown and matching robe while I am the end of life
- Bury me with my grandmother’s ring or cameo earrings
- Don’t close the curtains, I love the sunshine on my face
These may seem like insignificant or even silly things, but they could make a big difference in the way a person faces their end of life, wants to be seen by others, and keeps their end dignified based on their own preferences rather than what someone else might think they want.
This month is a good time to learn more about how hospice can benefit your senior loved ones, you as a family caregiver, and the rest of the family. It’s a good time to express wishes and communicate desires with the family.
Someday when the pages of my life end,
I know that you will be one of its most beautiful chapters.