Monday, March 24, 2008
Pregnancy and Palliative Care
If one was to talk about fields that no one would think would be related in medicine, obstetrics and palliative care seem to be worlds apart, but two recent articles make it clear these fields are not that far apart. In the first, an editorial from the Journal of the American Board of Family Practice, titled "Pregnancy care: an apprenticeship for Palliative Care?" (free PDF) the author defines how the beginning of life and end of life require similar approaches from the medical field.
When I read the title, I immediately recalled the wise words of a resident who rotated with me at Kansas City Hospice about how the unpredictability of death mirrors the unpredictability of when someone will give birth. That resident was David Wensel, DO, and he was from Mason City, Iowa, and I thought someone stole his idea, but then when I saw the author was his Palliative Medicine Fellowship Director David Clark, I remembered that Wensel told me he heard that from Clark. Anyway enough about my six degrees of separation.
Dr. Clark describes an obstetrics patient who helped him understand the cooperation, compromise, clear communication and respect that would later serve him well in his palliative care work. A table defines the salient teaching points about good doctor-patient relations in both fields and is helpful for mentors in obstetrics or palliative care. This table could also extend to all medicine specialties to some degree which is helpful to define a 'palliative care' approach to all patients, something I try to discuss with medical students who may never go into a field where they may see a dying patient.
The second article from MSNBC tells the story of the growth in perinatal hospices for parents who know before birth that their child has a terminal condition. The growth in perinatal hospices mirrors the rise in genetic screening and the dreaded anticipation with the knowledge of likely death soon after birth. The toll this can take on a family is enormous and requires a high degree of flexibility and sensitivity on the part of hospital and perinatal hospice staff. The article covers perinatal hospice very well and tells a wonderful story of how adversity can bring out the best in people. A great quote from the article:
“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”Below is a 4 minute video clip (from the MSNBC site) of the family whose story is told in the article. The mother sums it up at the end very well:
"There was so much support and love flowing around it all, that it was a beautiful experience I would never wish upon anyone else."Warning you may likely shed a few tears while watching this.
I am fortunate to have a perinatal hospice with my organization and the staff does wonderful and amazing work. If you have not had the chance to work with a perinatal hospice and you are in palliative medicine, reach out and see if you can help some programs. While the work can obviously be emotionally difficult it can be extremely rewarding.
- The Gazette (Montreal, Canada) has a fascinating historical look at the first two opium wars and a legal case to rival any current legal drama on television involving morphine and atropine. Great story for attendings who need to wax eloquently on rounds.
- Marc Dingman at Neuroscientifically Challenged (a blog) gives us a quick history of how medicine and science have looked at dopamine.
- Leftover morphine and hastened death are examined in an opinion piece from the Quad City Times. (Hello again Iowa!) The piece is written from someone's personal experience with a friend in hospice who had briefly talked about hastening her death. It appears the situation was averted with good symptom control and support, but the writer still appears to have a crisis of conscience. The comments section makes for good reading and understanding of how many different people view this difficult situation.
Clark WD. Pregnancy care: an apprenticeship for palliative care? J Am Board Fam Med. 2008 Jan-Feb;21(1):63-5. DOI: 10.3122/jabfm.2008.01.070099
5 Responses to “Pregnancy and Palliative Care”
March 27, 2008
The very first death I attended as a chaplaincy student was in Labor and Delivery. Twins, 20 weeks along, one dead in utero and the other delivered live, still in the amniotic sac. The mother cuddled her tiny, living son for those precious few minutes until he died, and told him she loved him over and over again. Dad couldn't handle it and had to leave the room. One of the nurses took care of him. I had no idea what to do, but let compassion take over and mom take the lead. She named her babies, and we talked about how beautiful they were and how much they looked like their dad (at 20 weeks?), and how much they looked like each other. She cradled them both together. It was such a tender, sad, moving experience. I've never forgotten it. That was back in the dark ages, when hospice was still relatively new and palliative care was pretty much unheard of. Thank god we've come far enough to provide such care as a team, to recognize the needs of new moms and dads who face the devastating news that their infant will not live very long. Obstetrics and palliative care, not oxymoronic at all, but sadly, at times absolutely necessary. ~Kate Maver
March 27, 2008
Thanks for the story Kate. Your approach of letting the family guide you is a good one. In delicate situations it is good to know when to nudge and when to hold back.
Many people will say to perinatal hospice staff, "How can you do this?" And what I hear often is that "You do what you have to do to help." I think most people who do not expect much of themselves in a perinatal hospice situation would find they could step up to a challenge much like you did.
Thanks again.
March 30, 2008
I think the connection between birth and end-of-life is quite clear, and various people have seen the parallels in a myriad of ways. There is a fairly common phenomenon of L&D nurses and midwives becoming hospice nurses. There are even now end of life Doulas (http://dying.about.com/od/glossary/g/endoflife_doula.htm), trained lay persons who care for the patient throughout the experience.
Personally, when family members ask the "how much time" question, I find it very useful to use a birth analogy (no matter how much we plan for and have an idea of how it will go, it never follows our "plan" exactly)
I think a certain amount of it is about control and who is at the center of the experience. We can intervene, but ultimately, we really are not in control of either a natural birth or death. Furthermore, the providers/ practitioners are not at the center of the experience...it can, and historically has happened w/o our involvement.
Finally, we are talking about the two greatest transitions in our life parallels seem natural
April 03, 2008
In 1983, I was in nursing school and one of the things that we had to do during our L/D rotation was to write a term paper regarding something specific to being on that unit. My friend Karen and I thought long and hard we wanted ours to be something unique, helpful, not like so many doing it on preclampsia and the like. We talked about how the L/D was usually such a happy floor but there were times when it wasn't. We decided to write it on what we as nurses could do when this happened. It was titled "Unmet Expectations on the OB Unit". It was hard to find research on this subject but we found some but also spoke to mothers and fathers that had lost their child at birth or not long after and asked them what could have been different or what would have helped them through this difficult time in their life. Our nursing instructor was astonished with this research paper she asked if she could copy it and leave a copy in the L/D and PP unit. Karen still works L/D and PP and I am a Regional Nurse educator for hospice. I still carry many of the things that I learned while writing this paper into my teaching.
April 03, 2008
I have a colleague who is both an L&D nurse and an adult bereavement specialist - it seems to work very well for her and obviously there are many others (based on these comments) who experience/appreciate the connection between the two!
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