Strengthen Family Caregivers During National Hospice & Palliative Care Month

Just like clockwork, November is again upon us. And so is National Hospice & Palliative Care Month – a time when many providers host activities and promote messages that help their communities understand how valuable hospice and palliative care can be for seriously ill patients and their families.

Take a closer look at those last three words of the previous sentence. When describing hospice and palliative care’s benefits, many of us almost automatically add “and their families” to mentions of the patient. And while most providers do a great job of supporting families emotionally and spiritually, the patient is – appropriately – the primary focus of care.

What more can providers do to support those members of the patient’s families who are their allies in caring for the patient at home?

In a prior post, this blog reported on a growing caregiver crisis – a widening gap between the shortage of professional caregivers and the number of Americans who will need care at home, relying instead on family members to provide that care.

Anyone who has been a primary caregiver for a loved one at home understands the impact it can have on their life. A recent article in Forbes magazine titled “The Financial and Personal Toll of Family Caregiving” provides eye-opening statistics that quantify some of the effects:

The toll on finances

• 68% of family caregivers provide financial support in caring for their loved one
• 67% who incurred caregiving expenses had to reduce their own living expenses to provide care
• 63% have withdrawn money from savings or sold assets to provide care
• 21% have borrowed money to provide care

The toll on careers

• 41% have reduced work hours or changed their schedule/shift to provide care
• 13% have resigned to provide care
• 9% have changed jobs or careers to provide care

The toll on relationships

• 62% had to make choices between spending time with friends and providing care
• 57% had to make choices between spending time with their spouse/partner and providing care
• 49% had to make choices between spending time with their children and providing care

Although I can’t prove it with data, my professional experience and intuition tell me a significant portion of these caregivers have not alleviated these burdens with help from hospice and palliative care – either because they don’t know about them or misunderstand their eligibility to receive them.

As a case in point, I heard a heartbreaking story from a hospice client just within the past few weeks. A man caring for his terminally ill mother had to quit his job, couldn’t pay his utility bills and had their heat shut off. When one of the hospice team members heard his story – after his mother had passed away – they asked, “Why didn’t you come to us for help?” Sadly, the man said, “I couldn’t afford my utility bills, so I knew I couldn’t afford hospice.”

One other point that I can support with data is this: In CAHPS and Hospice Compare ratings, “Training family to care for patients” is tied for last place in national average scores from families.

How is your staff trained to help train family caregivers? What tools do you have in place to support the family caregiver team? How much time do you or should you devote to building caregiver capabilities and their confidence?

Let’s leverage National Hospice & Palliative Care Month this year to begin stronger outreach to family caregivers. While providers continue to offer outstanding care for the body, mind and spirit of patients, consider how to make “and their families” an equally important commitment.