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!

Rethinking Comfort Measures

We talk a lot about comfort measures in end of life care. After discussing the futility of further treatments, conversation moves to those measures intended to give the very best quality of life possible for the time remaining.
When hospice care gets involved, those conversations also often have an elephant sized unspoken criteria sitting in the room – costs. Since the hospice care provider is responsible for all costs associated with the terminal diagnosis, keeping those costs down is a major goal. This is not straightforward profit-seeking and greed, either. We are all aware of how breathtakingly expensive medical treatments and drugs can be, and any organization that spends more than they take in is not around to provide services for long.
In my experience, this cost savings goal has led to some mythology in hospice care that needs to be addressed. I have had mutually exclusive teaching and instructions from different medical directors on the efficacy of various modalities that could be directly linked to financial, rather than evidence-based rationales.
I also want to address a second aspect of comfort measures. While our terminal patient is the primary focus of our interventions, we claim the entire family (as the patient defines them) as our focus as well. And sometimes, an intervention that is futile may be appropriate, in my opinion, for the well-being of the family. If that intervention is not harmful to the patient, will not cause discomfort, and is not overly expensive, the futility of it may be secondary to the comfort of the family. Examples would include a dose of antibiotic to a dying patient – futile in even extending life, but gives the family a sense of ‘everything was done’. This can also be part of a negotiation to comfort a particular family member who is struggling and demanding more extensive futile interventions. More discussion here.

When families think comfort care or hospice they usually think morphine. And morphine, along with its many synthetic family members is an incredibly valuable tool in our arsenal. But it is not the only one.

Starting with a couple of personal stories to illustrate what can constitute comfort care.

Sam Katzoff, NASA scientist, in 2010 (~100 years old) NOT my dad!

My practice in hospice always included oxygen for my patients, it was understood as a comfort measure that does not prolong suffering and while it may not be effective at maintaining normal plasma oxygen levels, it has a strong psychological impact on the patient as well as the family. What we did get rid of was the pulse oximeter. This falls under the overall heading of not testing where you will not be doing an intervention.

Fast forward to a couple of years ago when we were in process of moving my father and mother in with us at a much lower altitude because his COPD was exacerbated by where they lived. Two weeks before the move he wound up hospitalized with dehydration which was treated with IV fluids and sent him into congestive heart failure. This is a really common issue with the very elderly and why I always warned my end stage patients against going to the ER – dying kidneys just cannot process that amount of fluid – which is a different story! In any case he wound up in renal failure and was not responding to attempts remove the excess fluids with diuretics. Considering his age (91), his cardiac history and his COPD it was decided that he should go home on hospice. I agreed and we had them hold him in the hospital for the couple of days it would take to get him there. When he arrived home we were there, and the hospice nurse from the local agency arrived soon after. She stopped at his bedside and then joined us in the kitchen. The first thing she mentioned was that she had turned off his oxygen.  This did not go well. Like most folks with COPD, he was extremely dependent upon his oxygen both physically and psychologically. My mother, who suffers from early dementia, was also very tuned into his oxygen. And the fact is that despite everything, I held onto the hope that the final dose of diuretics he got in the hospital would work and he would pull out of this as he had done in the past. Hospice nurses are no more immune from magical thinking and denial than anyone else!  The nurse stated that keeping on his oxygen would just prolong his suffering.  After I explained my reasons for disagreement his oxygen went back on.  He was not in much pain at all, the morphine helped to ensure he was not suffering from shortness of breath (yet another post!), and of course the diuretics did not miraculously start to work. He died peacefully at home a couple of days later.  The oxygen was from a concentrator so the cost was negligible, and the comfort provided to my dad and the family was significant even if not measurable. This very closely reflects my experiences as a nurse with other COPD, Lung Cancer, and heart failure patients.

MY cat Vega in her younger days. In a box.

Next up for discussion in comfort care is fluids. When a person is no longer able to drink for whatever reason, the question of fluids arises. Families are generally pretty horrified by the thought of a loved one dying of thirst, much as they worry about them dying of hunger. All our evidence, including what our patients tell us, is that neither sensation is an issue for them.  And as I illustrated in my previous story, IV fluids tend to overload people at the end of life and lead to fluid overload in the lungs, heart and extremities. There has been discussion in the literature for some time about the value of something called clysis, or hypodermaclysis, where large amounts of fluid are injected under the skin, to be absorbed more slowly by the body. This is a practice that has been common in veterinary medicine for some time. It is not something I saw in hospice, and I am starting to believe that might need to change.

Now we get to Vega, the sweet face just up there in the box. She is 15 and suddenly dropped about half her body weight, which I suspected meant kidney failure. The veterinarian confirmed this and prescribed subcutaneous fluids and anti-emetics for comfort. I have been giving her 100ml of ringers lactate solution under the skin every evening. She tolerates the process very well, and has maintained her appetite with the help of the medication. Based on past experiences with end stage renal failure in cats, she is more comfortable and is surviving longer on the current regimen with no negative effects. This is causing me to question whether this might not be something we should consider much more often in end of life care. Also a very low cost intervention.

Now I move to things that are absolutely comfort care, palliative treatments and are also budget busters. How hospices handle the need for these treatments will probably vary and I am not familiar enough with current hospice billing to address that aspect. But they need to be pointed out.

Palliative radiation treatment for bone pain. While steroids and NSAIDS are helpful tools for bone pain, radiation can be the most effective treatment for bone pain caused by malignant neoplasms. It also is effective in preventing spinal compression complications from bone cancer in the spine.  Palliative radiation is also used to shrink inoperable tumors for comfort.  

Ascites is the accumulation of fluid in the abdomen seen very often in liver failure, but can also be a result of other disease processes. When the fluid accumulation becomes large enough it causes quite a bit of discomfort and paracentesis is often ordered to drain the fluids and relieve the pain and pressure. In the past, this almost always required that the patient go to a clinic and have the procedure done, and very frequently meant discharge from hospice (these are in my experience in the past and may not reflect practices elsewhere).  As the disease progresses, having to go ‘get tapped’ and have fluid drained increases in frequency and amount of fluid. The constant buildup and then removal can also have side effects for the patient as their bodies and blood pressure adjust to the changes.  Having had a patient with a drain for malignant pleural effusion at home, the ability to have a drain placed for ascites as well as effusions would be great for palliative care.

Blood transfusions for comfort is less well documented and probably more controversial. My experience with it was primarily in a setting of providing end of life care in a non-hospice clinical environment. My patients were oncology patients and hepatic failure patients who received transfusions for fatigue and weakness. There was definite pushback for my hepatic failure patients whose disease was alcohol related. (This was exacerbated by their status as members of minority groups, as this amount of resistance to transfusion was not noted in my non-minority patients. This is, of course, anecdotal…)  There is good evidence for the use of transfusions in patients with solid tumor cancers. Again, since this would be an inpatient procedure it would not be available for home hospice.

I would like to see the philosophy of hospice used less often to justify cost savings. And I, as a nurse, would appreciate having the respect of my medical directors demonstrated by honest rationales for policies, rather than unsubstantiated anecdotes intended to pacify patients and families.