End-of-Life Care: Relief for Hospice and Palliative Care Patients
Diane Schade, a geriatric and palliative care nurse practitioner, relieves suffering with cannabis.
Diane Schade, NP, is a board-certified geriatric and palliative care nurse practitioner. Palliative care nurses are part of an interdisciplinary team specializing in mitigating suffering and optimizing quality of life among people with serious illness. By definition and development over the years, palliative care supports people in any life stage. Hospice care focuses on quality and comfort measures provided during the final six months of life. Schade makes home visits on the eastern end of Long Island, New York, and helps patients manage symptoms including shortness of breath, fatigue, poor appetite, depression, restlessness, agitation, constipation, diarrhea, nausea, and insomnia.
“I am always looking for alternative medicines and therapies to alleviate suffering. I felt limited by having to rely so much on opioids and benzodiazepines,” Schade says. Following a simple online search, she read about the requirements for becoming a medical cannabis provider in her home state of New York. “I found an online certification course through the New York State Department of Health that I could work on in my spare time. It was very involved, and it took me a long time to work through the information.”
After completing the course, Schade became certified, which meant that she was empowered to authorize cannabis use for qualifying patients. However, she felt that she wanted to learn more, so she attended different conferences locally. “I also inquired at our local dispensary, which is run by Columbia Care,” Schade says. “I attended an informational event. The pharmacists there were very knowledgeable.” Later, Schade hosted another event at her home in collaboration with Columbia Care. “I wanted to hear from other health professionals about their experiences using the medication, successes and failures, doses, and how it worked for different illnesses.”
Introducing a New Era of Medicine to an Older Generation
Schade, who has been using cannabis in her practice for a year and a half, treats many geriatric patients. She’s seen exceptional results treating neurological diseases, such as Parkinson’s and multiple sclerosis, with cannabis. Her employer, George Dempsey, MD, a family physician in East Hampton, New York, was skeptical at first, she says. “But then he started hearing from patients whose symptoms were improving. Now he will refer patients to me that he feels might benefit.” Patients new to cannabis also are often skeptical, Schade says, and she’s become skilled in allaying their concerns.
To perfect her practice, she worked through the following learning curves.
Start Low and Go Slow
The biggest problem Schade faced early on was that patients stopped using cannabis because they didn’t get the desired response. “Unfortunately, we do not as yet have sufficient data that would recommend a starting dose. Therefore, we need to start at a low dose and titrate up slowly,” Schade says. “I advise patients not to be discouraged if cannabis doesn’t immediately give them relief. Most of the time, they will need to be titrated up until we discover what dose is right for them. It’s a process, so I will ask to see a patient a week after using the medicine. I want to know their response to the product—how much they took, how they felt, and what benefits they derived. I keep tabs on people; I don’t want them to give up because the dose is too low.”
Concerns About Intoxicating Effects
There are many preconceived notions about cannabis medicine. “Patients or their families will ask if taking medical cannabis is going to make them feel ‘high,’” Schade says. “I’ve had a few patients who were seeking a high and were disappointed. I’m careful to explain that when CBD is combined with THC, the CBD gets to the receptor sites first and diminishes most of the psychoactive effects.” Even so, she begins patients with formulas lower in THC and higher in the nonintoxicating CBD compound.
“I usually begin a patient new to medical cannabis with a sublingual tincture, which takes about 20 minutes to take effect and lasts for about three to four hours,” Schade says. “Tablets take longer to take effect, about an hour, and then last six to eight hours. I always start with a shorter-acting preparation. Once I’m sure the patient is comfortable with the formula and we have identified an effective dose, then I can switch to the longer-acting tablets. Vaping is another route of administration, but I believe it’s never a great idea to inhale anything into your lungs other than fresh air. The effect with vaping is almost immediate, so perhaps it’s appropriate for someone in excruciating pain, but the effect lasts only an hour.”
A critical new study published in the Journal of Palliative Care surveyed 310 clinicians via a 37-item online survey about their practice, results, and opinions about using medical cannabis in hospice and palliative patient settings. More than one-half of the respondents were nurses, followed by physicians and administrators, with representatives from 40 different US states. The study pointed to confusion about medical cannabis use, especially since it remains illegal according to federal law, and most clinicians have inadequate training on dosage, safety, and efficacy.1
The introduction to the study acknowledges that, “Evidence on the effectiveness of medical cannabis for symptoms experienced at the end of life such as pain, muscle spasms, anorexia, nausea, vomiting, and cachexia dates back thousands of years.” Modern health care clinicians seem to agree with that statement. According to the study, “Regardless of legal status, hospice staff members were overwhelmingly in agreement that [medical cannabis] is appropriate for hospice patients to have access to and use.” Participants in the study reported that cannabis was effective in reducing nausea and vomiting, pain, anxiety, and dry mouth. However, one-half of the physicians who responded indicated that they don’t write orders to certify patients for cannabis use. The majority of respondents (62%) work in states where medical cannabis is legal, but 33% were in states where it wasn’t permitted, and 5% were unsure of their state’s legal status.
The study indicates that patients and their families question staff about cannabis and that some family members said nothing else was effective in giving their family member relief. In an interview discussing the study, the lead author, Ryan Constantino, PharmD, MS, told Forbes magazine that patients pay out of pocket for cannabis. He stated, “Whether or not you think your patients are using it [cannabis], they likely are, at least in hospice.”2
According to National Hospice and Palliative Care Organization’s recent report, the principal diagnoses of hospice decedents are cancer (30.1%), circulatory/heart problems (17.6%), dementia (15.6%), “other,” (13.9%), respiratory (11.%), stroke (9.4%), and chronic kidney disease (2.3%).3 The organization’s website hosts a 2016 paper written by Peter A. Radice, MD, FACP, FAAHPM, about the use of cannabis in palliative care.4 Radice chronicles various absolute and relative contraindications and points to the lack of uniform dosing guidelines. The report lists the benefits of cannabis, “in treating patients with cancer, neurodegenerative diseases, inflammatory disease, end-of-life angst, uncontrolled seizures, and HIV cachexia.” Radice cautions that older adults metabolize cannabis more slowly and are more sensitive to its effects and says state laws insist cannabis be a last resort for children.
Further Research Is Vital
A review published by the Canadian Agency for Drugs and Technologies in Health about cannabis use in palliative care analyzed nine randomized controlled trials and found that cannabis provided uncertain benefits. The report concluded that further research is urgently needed to reduce uncertainty.
Cannabis training may result in palliative clinicians opting to intervene with cannabis medicine sooner. Sunil Aggarwal, MD, PhD, writes in Current Oncology that the integration of cannabis into specialized palliative care for oncology patients has been shifting closer to the time of diagnosis, which, in some instances, improves not only quality of life but also survival.6
In his article, Aggarwal weighs in on the challenges of implementing cannabis. “The benefits of integrating CIM [cannabinoid integrative medicine] into palliative care have been stifled by conflicting regulations, lingering stigma, research barriers, and product scarcity—much of which stems from poor awareness and knowledge gaps for patients, clinicians, and other stakeholders.” Aggarwal poses the question: What shall we do in the face of incomplete evidence? He summarizes his findings: “Integrating CIM into oncologic palliative care promises to improve overall health-related quality of life, to provide further relief from distressing symptoms and spiritual suffering, and to bring hope to patients and families facing terminal illness.”
Schade’s role as a palliative care nurse and an end-of-life doula (also known as a death midwife, a person who provides emotional, physical, and spiritual support and offers help to other caregivers in addressing the patient’s wants and needs during the final days of life) demonstrates she’s highly trusted by patients and their families. “This is more than a career for me. It’s a calling,” Schade says. “I feel honored to serve these patients. I’m absolutely dedicated to providing the best care that I can. Medical marijuana has become an important tool for palliating pain and other distressing symptoms. I’ve seen some really positive results, as have other health care professionals. I believe providing access to this remarkable and safe medicine is our responsibility.”
— Michele Deppe is a freelance writer based in upstate South Carolina.
1. Constantino RC, Felten N, Todd M, Maxwell T, McPherson ML. A survey of hospice professionals regarding medical cannabis practices. J Palliat Med. 2019;22(10):1208-1212.
2. Rosner A. Cannabis in hospice: growing demand for end-of-life care. Forbes website. https://www.forbes.com/sites/abbierosner/2019/06/25/cannabis-in-hospice-growing-demand-and-acceptance-for-end-of-life-care/#43f1e74f403a. Published June 25, 2019. Accessed June 12, 2020.
3. National Hospice and Palliative Care Organization. NHPCO facts and figures: 2018 edition. https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf. Updated July 2, 2019. Accessed June 12, 2020.
4. Radice PA; National Hospice and Palliative Care Organization. Cannabis use in palliative care: history, legality and implications for practice. https://www.nhpco.org/wp-content/uploads/2019/04/PALLIATIVECARE_Cannabis.pdf. Published 2016. Accessed June 12, 2020.
5. MacDonald E, Farrah K. Medical cannabis use in palliative care: review of clinical effectiveness and guidelines — an update. NCBI Bookshelf website. https://www.ncbi.nlm.nih.gov/books/NBK551867/. Published October 29, 2019. Accessed June 12, 2020.
6. Aggarwal SK. Use of cannabinoids in cancer care: palliative care. Curr Oncol. 2016;23(2):S33‐S36.