It's About Living, Not Dying - What you should know about palliative and hospice care

This week I’m giving my blog to a friend, Sharon Hall. Sharon was a care partner to her 96-year-old mother who had vascular dementia and died at home under Hospice care with her and her husband, Rod, who has frontotemporal degeneration (FTD). Sharon is an active advocate for FTD, she is an AFTD support group facilitator and educator. Sharon has recently begun to be involved as an e-Patient Ambassador for Coalition of Compassionate Care of California to educate on palliative care. She represents the dementia community in these efforts. Sharon was also the recipient of the 2017 Advocate of the Year Award at NCC17.

Caregiving takes a village

When a family is given a diagnosis of a serious illness, it is a very difficult time. Whether it be dementia, heart disease, COPD, or cancer, it will change the way you live the rest of your life. Palliative care is the team that discusses your quality of life. They ask what is important to you. They coordinate between your physicians, support the family, and explain the challenges of modern medicine.

Palliative care gives the family the support they need to wade through the piles of legal paperwork. Everyone needs an advanced directive, and the palliative team can walk you through that process and explain the options. They can also assist with a POLST (physician order for life sustaining treatment). They will also help you understand the disease and its progression and treatments. You can receive treatment while in palliative care, including surgery and chemotherapy.

The team will help with supporting the family, emotionally and spiritually, and have a team approach to navigate the complex medical system. Your primary care physician can make a referral to palliative care. If they say you are not “ready” for palliative care, you need to tell them you are, because any serious life-limiting illness qualifies for palliative care. Palliative care is NOT hospice. Palliative care just gives you extra help in understanding your options of treatment and respects your quality of life and your decisions.

The palliative team can mediate family meetings to discuss the disease and what the person diagnosed wants from their life and what they do not want at the end of life.

The local palliative team will be able to refer a family to support groups, therapists, and resources to help them in this journey. No one can successfully manage a serious illness alone. It is so necessary for care partners to get respite, learn about the disease, build their support team and take care of their own medical needs. The local palliative team can guide the process of living well with your illness and knowing when you need additional resources.

When the time comes for hospice care, they can make the transition smooth and seamless and discuss the options available under hospice care, as well. Medicare covers both palliative and hospice care. Most private insurance covers both, as well, but may have a copay.

Hospice care comes when 2 doctors agree that if a disease takes its natural course, the life expectancy is 6 months or less. Not even a doctor can predict death 6 months away with any accuracy. Many people spend far longer in hospice, but they must continue to decline to stay qualified. 

People can be dropped from hospice care if the disease is not advancing, but palliative can step in if, or when that happens. It affords continuity and helps you understand the progression of the disease.

When you are on hospice, they provide all supplies needed (from incontinence supplies to comfort medication to durable equipment, like a hospital bed). They also provide 1 week of respite for the caregiver every billing period (monthly). They must provide a hospice facility or hospital for this purpose. They will also have a social worker and chaplain, and many have music therapy, as well.

You get to decide which hospice to use, so ask these questions about services when you get an evaluation. You can change hospice providers at any time.

Home hospice means you are the primary caregiver. An aid will come for bathing and dressing, and a nurse will come to monitor vital signs, but the care is by family and/or friends. Hospice may be called 24/7 if any issues arise that you do not know how to handle. They might also ask if you want the person in hospice taken to a facility when death is imminent. 

Hearing your loved one has a serious illness is hard and having a support team of caring professionals help you through the journey is so important. Discussing end of life is uncomfortable for some families, but we will all have a last breath. Most people want to have control over when and how that occurs and how much intervention they want for life sustaining treatment. Let a palliative team, and subsequently a hospice team, ease these burdens, they are highly trained and compassionate.

Find a team near you at www.getpalliativecare.org 

Sharon Hall