Dying, Doulas, and Denial

This is a long post, unsurprising to anyone familiar with my posts. Please bear with me, lots to unpack here. Information on jobs working in death, including information on Death Doula training, courtesy of The Order of the Good Death

I am a part of the Death Positive community that is growing in recent years. Membership is very diverse in the backgrounds, ages, and life experiences of people with this interest. Many do not work in death or dying related vocations, some are moving into those areas and some are creating new ways of doing death and dying.
Doulas have become a popular choice for those making a birth plan, as someone there to assist with pregnancy and coaching/advocating during the birth. There was obviously some resistance from the medical community about the presence another individual with no legal or medical standing in the birth process, especially in light of the high percentage of litigation tied to obstetrics in general. But with time and persistence, doulas have carved themselves out a place in the team and proved to be an overall benefit to both the laboring mom and the overworked nurses.
Today, we are seeing a new group who refer to their vocation as Death Doulas, or Death Midwives. Seeing the parallels between the needs of the birthing mother and the dying person and their family, these are holistic advocates for the patient and family. They provide expertise on the dying process, comfort, and support. They also assist with end of life planning  and are family support and advocates through all that is involved in final arrangements, funeral, memorial, viewing, etc.

Death doulas are a response to observations that our culture has become very death denying, and that corporate funeral industry has created and promoted a lot of myths and perceptions that create the impressi0n that the dead body is a toxic and dangerous thing that must be removed immediately, embalmed for sanitation, and buried in a vault for safety. The medicalization of the dying process has also created a lot of fear from families about having the dying person at home. Folks are literally afraid of killing a dying family member, afraid that the person will be in terrible untreated pain, and afraid because they don’t know what to expect. Both the birth and death doula movements are responses to the perception that the patient and family are being inadequately supported in an overmedicalized and profit-driven system.

A challenge to both the birth and death doulas is that since they are not part of the medical system, they are not generally covered by insurance. So the patient or family must pay the cost out of pocket, which limits these services to those who can pay for them. Of course those in most need of such services are often those least able to pay for a private advocate. This also means that the person wanting to make a living providing these services is pretty limited in their options for employment. Hopefully this will improve in the future, but for now self employment seems to be the most common practice.

Screenshot of search for Death Doula Certification

My focus is on death doulas, which is what I will address here. A concern with the profession of death doula is the lack of consistent practice guidelines with professional oversight and guidance, currently a number of groups offer certification and training. I have no information at this point about the quality of the training, and certainly lack the funds to sample them! I am familiar with a number of folks who are training and practicing as well as quite a few who wish to do so. I hope to see some consolidation of training and practice along with a professional ethics guideline be developed.

 My experience in Death Positive communities and social media has been of folks really excited and motivated by the idea of making death a normal experience, and removing the fear and denial of death from our culture. This enthusiasm is very similar to what we have seen in folks coming into hospice care as well. That energy and positive attitude are wonderful. The issues arise when it becomes evangelical and proselytizing begins. I have seen it in hospice nurses quite frequently. I see it in these communities as well. It comes from losing the primary goal, which is to support patients and families in their final journey – on THEIR terms. Not ours. We are there to support and advocate for the needs they identify. We can offer information with our support, but we should never demand that they accept our point of view. It is not about us, or our needs. With hospice nurses the most frequent case of this I see is the belief that denial is a problem that they must solve. Breaking the patient or family’s denial is a goal that is discussed frequently. I disagree with this, and have support in this from a number of sources. Of course, for the person to be on hospice in the first place means they or their decision maker has had to agree to the plan and accept that the patient will be getting end of life care. In the past, when patients and families were having to fight the system to be allowed to die at home, this was not much of a problem. Today, with health systems making it practically mandatory and physicians sometimes failing to even communicate their terminal status to the patient, it is much more complicated.  There is also the issue of culture, which has a very strong influence on how families and patients talk about death. A cornerstone of hospice is that we don’t lie to patients or pretend that they are going to get better. Which is very much part of OUR cultural values. But frequently in some cultures, we encounter caregivers who forbid us to tell the patient that they are dying, who instruct us not to mention death, and ask us to not say the word ‘hospice’ either. This seems on the face of it to be a really big problem for a hospice team. How can we give care and support at end of life if we are not allowed to talk about end of life? But our role is to support the patient and family as they direct and with the needs they identify. Their culture has a different way of dealing with and addressing death than ours does. Some even have a different way of conceptualizing what it means and how it works. My job is to figure out how the family need to be supported and give that support. The cultural differences and the barriers of language and trust can make this extremely challenging. But trying to enforce my cultural construct of a ‘good death’ on someone else is absolutely not the way to give them a good death, nor to support the family. We have to assess what they identify as a good death. So we find a family member willing to communicate to us what they need and we honor that. Which brings me back to the death doula (or any new person to end of life care) – I see a lot of folks expressing what they want to ‘give’ to families, what they envision their role and support to look like. They have an idea of what it is ‘supposed’ to be, how it ‘should’ work, and want to make that happen. Which is not what is needed. What is needed is great skills in spending time with families and finding out what they need, how they wish to be supported, what they see a good death looking like. The time to spend doing that is the place that I can see doulas being a wonderful addition to a hospice team, or an alternative if hospice is not available or desired. Because honestly, as a hospice nurse the most important part of my job, the part that helped families the most, was being available at 2am when it is dark and everyone is asleep, the doctors office is closed, and a caregiver is worried or afraid. Obviously, the ability to sit on the bed adjusting the IV pain meds during a crisis is important. But that was needed a lot less often than those 2am calls.

 If end of life care is your calling, be sure to sort out your own issues before you begin caring for others. In the past it was common for hospices to require that a person have had a year since they had a major loss. Obviously this is not practical once you are employed, but it addresses a common problem. Folks who are processing a death and are working through their grief often see giving support to others as a way to help themselves. It is common, it is admirable, but it is not what you are there to do. Because what happens is that the person who is there to help winds up spending too much time talking about their own loss. It is hard when you start working with the dying not to do this, and it hard not to do it when you have been working with the dying or a long time and have seen similar issues. Part of good practice is to really think about what you say before you say it, and ensure you are focused and present with the folks in front of you.

Hospice teams tend to be quite protective of our patients and their families, and we are protective of our practice as well. Because we came out of the same recognition of the lack of support for the needs of the dying person and their family, and eventually managed to carve out our place and actually become a funded benefit via Medicare and many insurances. Hospice is a special pocket of the medical system. We have benefits that other practices do not, and protecting those benefits that allow us to give good care is important. We deal in large amounts and large doses of narcotics and other scheduled drugs, and have been able to have them delivered or mailed so families do not have to be constantly running to a pharmacy. We have a lot of latitude in management and dosing of those controlled drugs in the home. Especially during the current opiates ‘crisis’, it is critically important for us to maintain the ability to do this in order to ensure we can give appropriate pain control in the home – the foundation of home hospice. We have been very strictly self-policing in this area for a long time. As hospice nurses, we depend upon the trust of physicians to prescribe and to trust our judgement in assessing and evaluating patient needs in the home. So if we observe someone whose issues or competence threaten that relationship we will quickly deal with the problem before it becomes a problem. Drug diversion by hospice workers is extremely rare in my experience, we sort those folks out before they get into a home,  or identify and remove them quickly. Patient friends and family are much more of a problem, and we have a lot of strategies for dealing with those issues. Once again, because being seen as a source for controlled substances to get out into the community risks the trust of the physicians we work with and the ability to continue giving care at home. I worked in a major metropolitan area where there were a number of hospice agencies and we all had great relationships and professional respect from the physicians we worked with. I have also worked in a much smaller city where there had been lots of turnover of hospice agencies and some issues with diversion by employees. It only takes a couple of issues to poison the well. Local physicians saw us all as potential risks to their licensure and it was much harder to do our jobs. All this to explain why we might be more resistant to another care provider coming into the home to assist who has not been subject to fingerprinting, background checks or state licensure requirements like we are.

H0spice nurses see ourselves as advocates for the patient and family. Our social workers, CNAs, chaplains, and volunteers see themselves in this role as well. We have frequent team meetings to discuss each patient to ensure that we are all on the same page. And nurses can be control freaks – shocking, I know. Putting someone not on the team in the home to advise our patients – especially if we have no idea what that advice might look like is problematic for us. I work hard to establish trust with families, and depend on them to let me know what is really going on so I can give good care and guidance. The flip side of that is that since we are working for an agency that needs to control costs, we are very often limited in the time we have to spend with the families. Nurses very often work all day and rotate on call at nights, so sitting up all night with a family is rarely an option. And that is often the one thing that the family needs the most.

I think Death Doulas are a great thing, and I look forward to seeing the profession really grow and gain acceptance. We need more people who are able to figure out what families need and how to provide that, and this is where folks doing this work are going to shine.  This strikes me as a great opportunity for retired and disabled nurses as well. Those of us who can no longer physically practice, but have the knowledge and the heart to help. My personal practice when I was working as a nurse was probably closer to the role of a death doula than a hospice case manager. I am a night person, so while I did love doing case management and developing a relationship with families, I tended to request a position doing on-call full time. This took pressure off the other nurses, and allowed me the luxury of spending more time with families at night, doing crisis management and attending deaths. (Also lots of disimpactions, but that is another post!) I got to do lots of education, working with mortuaries at the time of death, and just sitting with the dying.

The ability to stay with the family through the death and continue that level of support after the death is also a huge need, and a great service. Being able to support and assist families in making arrangements, whether they desire a traditional (in modern terms) funeral or a ‘green’ alternative (traditional in pre-modern terms!), fills a need that is growing. We are living to be older, and there is a lot more reliance on our kids and grandkids to do the heavy lifting, literally and figuratively. Having more skilled support can only be a good thing.

My goal here is to communicate why those wishing to work with the dying, whether as doulas or in another capacity, may find some resistance from the established hospice structure. It has moved from being a revolutionary and controversial practice into infrastructure – which is not a bad thing, but it can lead to insularity. Keep at it. Be willing to demonstrate your ability to assist without imposing yourself on the needs of others. Evangelize on social media, if you must. But in the sacred space of the dying, be there for them on their terms. And thank you for being a helper!

Thanks for reading!

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