The role of volunteers in Perinatal Hospice

Some of my Volunteers on their way to the “Walk to Rememeber” with a van full of supplies

The first time I ever saw the words “Perinatal” & “Hospice” next to one another, it was very shortly after the term was invented and almost no programs existed. In the intervening years that the idea fermented in my head, a few programs started, but it was still such a novel idea that no one who I spoke to in my world had ever heard of it.

I’m thankful that now the idea is catching on; people are interested and well informed. The programs that have started are all so different – the specific focus of each program is often driven by the specialty of the champions who started each program…there are  very Medically focused programs started by Physicians (Kristen Anderson Perinatal Hospice in Northern VA, & a great program run by a Neonatologist in Toronto), many Nurse run programs like mine, a Chaplain run program in Pennsylvania, and numerous Volunteer programs spread across the country (Sound Journeys and Prenatal Partners for Life as examples) .

No matter where we started, most of us likely realized that it would take the proverbial “Village” to care for each family well – the MD programs reaching towards Nursing and Volunteers, the Volunteers encouraging Medical Staffs to create better hospital processes, & Nursing programs going in both directions.

I may have started out alone, but I’m not anymore. In the course of coordinating a Palliative Care delivery, I will interact with Perinatology, Obstetrics, Neonatology, Labor & Delivery, Mother/Baby, Case Management, Pastoral Care, Histology, Registration, Photographers,  Security & others.

On the topic of volunteers, I am very blessed to have a wonderful cluster of women I cared for in the past who have made themselves available in case the parents preparing for a birth want mentors/companions for the journey. Volunteers have donated expert photography talent, founded and run a huge “Walk to Remember”, spent hours talking to moms/couples, helped make mementos, provided dinners, collected & packed up seashells, sponsored classes, made food for Nursing learning retreats, hand made special clothes & blankets & donated baby supplies. They are a very active and effective group.

In a “perfect world”, every city would have a hospital with a program that functioned like a well oiled machine (not one where the wheel had to be reinvented with each case) with buy-in from the leading Physicians down with seamless follow-through to a devoted group of volunteers. Most places aren’t there yet, but the good examples are setting the pace and progress is being made.

I doubt that anyone would disagree with much I have said up to now, here is where I get a bit more controversial…  In places where hospitals have failed to create programs to meet the needs of their local service area, some volunteer groups have stepped into the vacuum left by these avoidant hospitals in ways that are not a good trend.

I have read the training manuals of one group who instructs their volunteers to write birth plans, attend deliveries, arrange specialist consultations and get actively involved with end of life care in NICUs.   Health Care professionals have “Scope of Practice” norms that are reinforced by state practice laws and guidelines. Those wanting to support families through these difficult but profoundly meaningful times can’t simply ignore these practice guidelines because they have good intentions.

Community activists who feel passionate about this care can build bridges with hospitals and their staffs while clearly stating the expectation that a good system of care be developed within the hospital framework where these tasks are done.

Specifically on the topic of birth plans…after 26 years as an RN 16 in Neonatal ICU (most of which being on the Resus teams that went to deliveries…hundreds of high risk deliveries), 8 years in my job and dozens of Palliative Care deliveries, our head OB physician told me I have no business doing “birth plans” and she had a darn good point. BIRTH plans for these deliveries need to be done with the Midwife or OB Physician. Period.

In addition, though, I work with parents to create a “Parenting Plan” which give them a way to communicate their wishes for the whole pre/intra/post birth with regard to the care of the baby. I’m honest with them that I have the secondary goal of sparking conversation between them about a lot of the options they will have for care, so even if they never get a plan written onto paper,  they will have exposed themselves to some of the ideas that they will need to make decisions about later and discuss them.

I use a 3 page fill-in-the-blank preprinted plan as a starting point, but they are free to write a narrative plan instead and/or write a cover letter. Narrative plans may give you a feeling of control being able to write everything out in your own words…that is a really nice idea, BUT if your delivery happens on a day when the proverbial “feces is flying at the fan” you are much more likely to have your plan followed if people can skim the plan to find the exact content they are looking for, so either do a fill-in plan and attach it or split your paragraphs with bold subject headers.

I have myself watched mentor/volunteer moms say to a new person “when you make your plan, be sure to include____, it made a big difference to us” and that kind of stuff is wonderful and helpful (they may even give a list of a number of things to take into consideration and that is great too) but there are simply too many factors and variables at work during a delivery / immediate post delivery palliative care case for a person who has only a handful of these experiences to be able to properly guide this process.

In most cases, details I learn about their wishes at delivery during the creation of the “Parenting Plan” inform me of things I need to start working on weeks before the delivery – things that would have NEVER succeeded if I had not been part of that conversation.

What I am saying is…if a hospital is not offering an experienced person to create a plan with the family, the next step is to INSIST that they provide an experienced person, NOT getting nice, well meaning volunteers to do it. (And I DONT say this because of a lack of love or appreciation for volunteers) If the Hospital claims that they don’t know how, refer them to perinatalhospice.org where there is a plethora of resources for caregivers.

Wonderful partnerships can be developed and people can work together to support families, but the division of tasks must be appropriate.

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