I work in several different capacities with patients nearing end of life here in Maine. While hospice is one of them – and a passion! – there is an ongoing shortage of hospice resources and issues with difficulty of delivery of services throughout the state, and the country. Not all hospice is the same; when employed by a particular hospice, one is tied to their restrictions, ideologies and modalities of practice.
It was for these reasons that, when I transitioned from work in emergency room nursing to end of life care, I chose to work for myself and not an established hospice. I started a company called Changing the Face of Dying. I met with other individuals who worked in end of life, and I trained in New Zealand and Australia; they are ranked much higher than the US in their quality of end of life care.
I also have spent the last several years devouring the ever-increasing literature on death and dying that floods our media. I find it odd that we live in a society so absolutely surrounded with death and dying and yet we still manage to systematically deny the realities of it. There’s a flaw in the statement that we’re trying to remove the taboo around talking about Death. Truly, there is no taboo: we’re fine to talk about it. The problem is denial, that someday death coming for us and those we love.
My work as a death doula draws on my pool of knowledge gained from years inside the medical industry. I do draw a careful line, making sure I do not operate officially on my nursing license when working as a doula. Many in this growing field come from varied non-medical backgrounds. Death doulas are not, as of yet, nationally certified, though agencies like INELDA (International End of Life Doula Association) continue to move toward that goal. The details of exactly what we do vary, from provider to provider as well as for each family that we serve.
The fundamental idea is being there to support the patient and family through the dying process in whatever ways they may need. A death doula has experience and understanding of the dying process — its physical and emotional effects, signs and symptoms. It’s a tall order, because these things vary widely depending on the person, their condition, personality and circumstances. We provide emotional and physical support throughout the process of advanced disease and death.
I help families identify the ways they have of helping each other and their loved ones, to communicate their limitations, to fill gaps in care, and to cope with the stressors and stumbling blocks of providing care to a seriously ill person in the home. I nearly always engage hospice for the families that I work with. I do this because it just makes good sense.
Most chronically or severely ill patients will have the option for hospice under Medicare, Medicaid or private insurance. I believe that if they have the benefit, they should use it. Hospice is support; it is nursing resources, medications, supplies and equipment; and it is seeing your own physician and the facilitation of care directed by the patient and family. It’s (theoretically) what everyone says they want when they say they want to die at home.
Ethically, if I asked someone to pay me to do this and to not maximize their insurance benefits, I’m not necessarily doing a patient and family a good deed. Insurance does not cover the services I offer. So I work with hospice, in hopes that together we can maximize the experience. It gives me a unique vantage point to be able to bring in solutions and options that hospice can’t always facilitate. I also get to be closer to a family; my time isn’t split between fifteen different patients. I don’t have an overseeing organization telling me which tasks I can or can’t do for a family or if I’ve given them too much time.
Using the patient’s hospice benefits also frees me up to focus on the parts I do best. If they take care of medication and equipment delivery and collaborate on care concerns, then I have more time with the patient and family to facilitate other vital portions of end-of-life care. I can teach them how to use awesome alternative solutions (like constipation cookies or fruity mouth swabs) or do legacy projects and paint giant murals on their walls that will help them remember the good parts of this experience for a long time to come.
I get to bring in solutions that hospice isn’t allowed to talk about – and that’s ultimately what, after that long preamble, we’re talking about here. I can speak freely in my role as a death doula in ways I cannot when I work for hospice. I can tell the families I work for openly and honestly that they might hugely benefit from adding medical marijuana (MMJ) to their regimen, and I can explain to them why I feel that way.
I can pick up the phone and call the dispensary and talk to the head of the Mark Bushy Compassion Program and move things forward. I can call their doctor and recommend a medical marijuana certification card – and explain to the family that it’s not a prescription and why. I can show them how to make everything from a medical marijuana suppository to a delicious medical marijuana caramel and a lot of other incredible effective preparations in between. I can recommend a good number of the preparations from the dispensary first hand, not just because I’ve seen what these things can do for other hospice patients – how much it can improve their time and symptom management – but also because it made so much difference last year in my journey with my grandmother while she was on hospice.
Hospice organizations, especially federally funded non-profits, have a whole lot of regulations around even talking about these programs to patients. I understand why. I respect these rules and I adhere to them when I work for hospice, because no one wants to see funding dry up for any hospice organization. There’s too little of this care as it is, trying to reach too big of a population. You don’t put that in jeopardy. So no matter how slight the risk may seem, as long as there is a risk, I don’t take it.
Every time though, it makes me sad. Actually, it makes me a whole host of emotions: sad, angry, and outraged. Those rules, and the need to protect the many, come at the expense of patients who could find a great deal of relief from medical cannabis at end-of-life. My patients who do use use MMJ are, on-average, using much less narcotic medications, have far less anxiety, and require far less medical intervention at the last stages of end of life. They have vastly superior control over neuropathic pain (which is traditionally not well controlled with narcotics); they use it for breathing, mood, insomnia, muscle spasm, tremor control, cough, GI distress, nausea and/or appetite stimulation. The list of benefits is long, and in my role as a doula I work to maximize MMJ use for patients that are open to the possibilities.
Many patients came to me through word of mouth from a family member who was familiar with my work. One of my favorite patients had been diagnosed a year before with stage 4 pancreatic cancer. She was about to fail out of her last option trial at Dana Farber; she was out of effective treatments and quickly running out of time. Luckily, she was one of the few who had a provider who was already willing to get her an MMJ certification, and it was easy to get her moving on the Compassion Program.
She had been endlessly frustrated by the fatigue and clouded brain caused by the large amount of narcotic pain medication required to manage the symptoms from the tumors to her bones, liver and spleen. She also suffered from persistent pain in her liver, nausea, anxiety, itching and neuropathic pain caused by abdominal stretching. The team at the Mark Bushey Compassion Program did an amazing job providing her information and formulations to help balance her pain and symptoms. In the first weeks of working together, we were able to reduce her narcotic consumption, stabilize her pain, reduce her anxiety and have quality discussions with her family about where this was going – and it was going fast.
Hospice was brought in as soon as possible, and while the hospice staff were accepting of the use of medical marijuana, like most hospice agencies, they stayed clear of the details. The nurses had little idea how the products worked or if there would be interactions with traditional medications used in end-of-life management. I watch this type of interaction and again; it’s startling to me that a nurse practicing in this area could remain ignorant of therapies that are so beneficial to their patient population. That, however, is what the stigma has done: the fear of government crackdown, funding being yanked, penalties and the threat of legal action blocks transfer of knowledge, development of knowledge through study and education of patients, families and professionals about the benefits and (negligible) side effects of medical cannabis.
We live in a society where the patient suffers because the providers are too afraid to educate themselves on the potential, even now as it becomes more and more widespread in its use and the knowledge of its efficacy.
That’s where I come in, explaining and directing questions as necessary back to the Compassion program. The more I taught the family, the more the Program taught the family, the more they saw the person they loved having control and symptom management from her cannabis products, the family came to strongly advocate for her using these products as well. Aside from dry mouth, the side effects from the cannabis were much more tolerable from her perspective than those of more traditional medications. It was her choice to use CBD capsules to cut out her dilaudid entirely in the first weeks of our journey together. It worked! She maintained solid pain control and recovered some mental clarity. Unfortunately, a disease at this stage makes pain an endlessly moving target.
Her family never batted an eye at the idea of using whatever was necessary to make her comfortable. In long nights we supported her with all the traditional hospice medications but also nearby was always the supply of cannabis products: a vape pen, cannabis tea, tincture, cookies and salve. We all knew if she was complaining of the pain in her liver, there was only one thing that would help: her tincture.
With her, time wasn’t on our side; her decline was relatively rapid, though not perhaps as rapid as I expected in those first days of our meeting. I can honestly tell you, I believe that much of her quality of life that she was able to squeak out in the end had a lot to do with using medical cannabis as an adjunct. I’d also like to think that I had a bit of a positive effect too. More than anything, I would say it was the amazing family that surrounded her, that supported the idea of things that our society and medical culture has yet to embrace, and that loved her with tenacity and depth that could warm one’s heart and perhaps even keep it beating a bit longer.
For my grandmother, for the patient I speak of here, for countless other hospice patients, this has been the alternative that has made the difference in the end. Yet I know, I could call most physicians tomorrow and ask for a certification for my hospice patient and be told “no”. No room for discussion, no willingness to be educated, just no. The work that this program does, the availability of this program – it shouldn’t just be a few patients here and there; it should be to every hospice patient in our country. Every hospice nurse should know all the benefits that cannabis can provide, every doctor should understand them as well, and the choice to use them? Well, that should belong to the patient and their family.
As long as hospices can’t talk about it, as long as the doctors won’t, and as long as the nurses are stuck in the middle, I’ll be here as a death doula, trying to bring better options to my patients and their families. There’s one hell of a reward for being a top referrer to the Mark Bushey Compassion Program: it’s how well I sleep at night.