Please Don’t Use The H Word

By  by Maryann Giunta; co-founder of Evening Star End-of-Life Doula Services, LLC

As an end-of-life doula, I was stunned during a public education conversation to realize that hospice care seemed to not only be a taboo word but also how to utilize the service itself was very misunderstood! Now that I am a private practice and a hospice doula, I am even more passionate about clearing the energy around this important service we dare not mention.

The basics: a person qualifies for hospice care when a doctor considers their prognosis to be 6 months or less. Because an individual’s decline is rather unpredictable or unique, a person can live longer than this 6 month span, and actually with hospice on board, many folks do! 

A typical hospice care team may include nurses, CNAs, social work and chaplains. Some organizations offer volunteers for companionship. When folks enroll early into a hospice program and start receiving medication and pain management, support in getting their final arrangements made, and possibly respite care for their family caregivers, this may improve mood or even health in a person to the point where they live past their 6 month prognosis. If this happens, they can be recertified for another 6 months, or if their health has really stabilized they may wish to “graduate” off of services until the support is needed again. 

The misconceptions: we often hear from families or individuals with terminal illness that “they aren’t ready yet” for hospice, even if their health is in significant decline. This may be because a common understanding is that you call hospice when a person has “given up”. This resistance often results in late hospice enrollment where patients only receive care for a handful of days or worse case hours. The average hospice benefit use is still only just a few weeks - meanwhile they may have experienced much more comfort and support for many months already, if only…

As a private practice doula, we can work with folks well before a 6 month diagnosis. In fact, you don’t even need a diagnosis at all! We’ve worked with young, healthy folks just wanting to gather information to get some planning done. We love proactive work; it really offers peace of mind to folks for emergency decisions.  Even in just simple planning of selecting your medical representative appointed through their advance directives, important conversations with loved ones have already been initiated regarding their wishes and other personal priorities so that decisions don’t need to be made during a crisis.  

Because we get to work with folks earlier in a health decline than a hospice group, we may gently encourage folks to consider a hospice evaluation (which the patient of a family member can call to make, no doctor referral required) to see if they qualify for support to begin sooner than later. 

I happen to work for Beloved Hospice, a younger organization in the field but one that actually has additional ancillary services like end-of-life doulas, music therapists, massage and even acupuncture included in their fold of standard service providers. It is NOT very common for doulas to be offered, what our support looks like is often something individuals and families need some education on. I have seen many times how families who had no idea doulas existed feel that we were a very significant piece of the safety net under them during their family’s journey.

And even though I work weekly with folks on hospice services, at times there are still requests from the family that the team not mention that we are with hospice during our visits. There are still folks that are onboarding with hospice while actively transitioning because they waited until things got that unmanageable, all to resist being a “hospice patient” and denying their mortality is actually real. 

I mention these scenarios without judgement. Working in the end-of-life field for nearly 10 years has taught me how very avoidant our culture is in looking toward the last chapter of our lives, and I’m not here to force folks to do that before they are ready. My hope in providing my doula support is that families who get to experience their loved one’s careteam during their end-of-life process can help to soften the resistance to hospice, accept support, and remind them that they are still an empowered participant in the journey.  What we resist persists, and a loved one didn’t die because of hospice, they were already dying while receiving support.

Maryann Giunta; co-founder of Evening Star End-of-Life Doula Services, LLC

The unexpected terminal diagnosis of her father, resulting in his death at home 15 months later, offered Maryann the opportunity to utilize her therapeutic skills beyond the “curative” realm of the medical world. Being bedside for her loved one during active dying, she discovered her ability to be present during end-of-life transition.