Hospice and Medical Aid in Dying
By Libby Hopkins, MA, BSN, RN, CHPN, CHPCA
Editor’s Preface: Part II is a continuation of our two-part look into the critical end-of-life service known as Hospice. Last month Coalition Steering Committee member, Libby Hopkins, explained the origin and philosophy of Hospice, the services available and what to consider when searching for a qualified hospice provider. This month, we look at how Hospice has evolved and adapted in the ten jurisdictions where medical aid in dying has been authorized and what New Mexico hospice providers can learn from these states.
Libby Hopkins is a Registered Nurse and holds a BS in Nursing, a Master’s in Organizational Management and a Graduate Certificate in Applied Thanatology (the study of death, dying and mourning). She maintains certifications as a Hospice and Palliative Care Nurse, and a Hospice Compliance Professional. Libby is currently the Director of Quality Improvement for Hospice of New Mexico, but her long career consists of serving in leadership, clinical and educational roles for multiple NM hospice organizations, including NM VA Healthcare System, Presbyterian Home Health and Hospice, and Hospice of the Sandias, among others. In addition to serving on the Coalition steering committee, Libby is active with the Conversation Project and volunteers with the Chevre Kaddisha: participating in the holy washing ceremony for Jewish bodies at local mortuaries. She is a community presenter (and has presented nationally and internationally) on topics related to serious illness, palliative and hospice care.
Last month, in Part I of this article, I outlined the history of hospice – its origin and philosophy. The patient-centered ideology of “Care, not Cure” exists to promote quality of life during the time an individual has remaining, whatever “quality” means to the individual and his or her loved ones. With more states authorizing or considering legislation to legalize the use of Medical Aid in Dying (MAID), many hospice organizations find themselves considering this self-directed care tenet in the context of MAID, and contemplating the role they may choose to play in supporting patients who can legally choose this end-of-life option.
To date, nine states (Oregon, Washington, Montana, Vermont, California, Colorado, Hawaii, New Jersey, Maine) and the District of Columbia allow MAID. Oregon’s Death With Dignity Act, which permits terminally ill state residents aged 18 years or older to make a voluntary informed choice to be prescribed life-ending drugs by a physician, was first passed 25 years ago. The Oregon legislation, as well as laws in other authorized jurisdictions, require the publication of annual statistical reports on the information of patients and physicians who participate in MAID. Now, with decades of experience and reporting, Oregon’s record offers insight for other states, like New Mexico, which plan to introduce MAID legislation.
While studies show some variances in usage from state to state, Oregon reports that almost 88% of patients who use MAID are under hospice care. Prescriptions for the medication used in MAID may be written by hospice physicians, however this is not always the case and all eligible patients, whether receiving hospice services or not, are eligible to obtain a MAID prescription. Hospice agencies, however, need to understand and accept the reality that once MAID is legal, patients in their care may decide to opt for it and they must be prepared to respond accordingly.
Given that the hospice ethos is so steeped in patient self-determination, why might a hospice choose not to participate in MAID?
In states where MAID has been authorized, not all hospices, or providers within a hospice, feel comfortable being involved in the process. There are often clinical concerns at the outset because of lack of training of providers on what medications to use and how to educate the patient and loved ones on what to expect after ingestion of the dose (timeframe, side effects, certainty of lethality, etc.). There are also business concerns that communities or referral sources who oppose MAID may no longer wish to refer their patients to a hospice that participates in MAID. There can be concern by the prescribing doctor or hospice itself that they will become known as “the one that does MAID”, and thus be referred to and called upon disproportionately for MAID requests.
There may also be moral, ethical or religious objections by the hospice itself, and by other necessary participants such as pharmacies. Some hospices have national overseeing bodies which may, for continuity purposes or other reasons, create national or regional policies to prohibit their providers from writing MAID prescriptions in their roles within the hospice, and/or prohibit hospice staff from being present at a MAID death. In all states that have authorized MAID, there is an “opt-out” provision so that no organization, no facility or no individual health care provider is required to participate in the process in any way. In accordance with this, New Mexico has included a strong conscience clause in its proposed Elizabeth Whitefield End-of-Life Options Act.
Here in New Mexico, there is interest, curiosity, and some anxiety among hospice agencies and other medical providers about what to expect if MAID legislation passes. The proposed New Mexico legislation, like those in authorized jurisdictions, requires that patients be of sound mind, adult age, terminally ill, that the terminal diagnosis (not the medication ingestion) be recorded on the death certificate, that the patient must be physically able to self-administer the medication (no one else can legally administer it), and that the provider or any hospice staff are not required to be present or participate in any way. Patients may, however, request the presence of various hospice staff members and they may choose to be present for support, if allowed by the agency.
What are some benefits of hospice organizations participating in the MAID process when requested by patients?
A primary advantage for hospices that participate in the process and honor patients’ requests for medical aid in dying is that they are practicing in concert with patient self-determination and individualized care which is so germane to the hospice philosophy.
According to a Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to die at home. More and more Americans are turning to hospice services to make that possible. And now with more than 1 in 5 Americans having legal access to MAID, more people are likely to achieve the home death they wish. A hospice’s participation in MAID supports the ethical pride that exists in neither abandoning an existing patient nor declining care to a prospective patient based on his or her wishes to legally end their life and avoid needless pain and suffering.
For the hospice patient, in addition to the obvious advantage of continuity of care, another benefit is having a trained interdisciplinary team available to provide holistic care and support throughout the process. This may include a social worker, counselor or chaplain who facilitates discussions with the patient’s family if the patient wishes, and asks relevant questions such as when, where, with whom the patient wishes to die, and assists with other logistics as requested by the patient.
The MAID experiences in authorized states indicate that reluctance or refusal of hospice organizations to participate in MAID, as well as genuine conscientious objections and fears, are typically more prominent early in the implementation phase. A primary factor behind this hesitancy is often the lack of knowledge and understanding of the main elements of the law.
Many of these concerns diminish over time. At least that is what nurses, social workers and a chaplain from California and Colorado have explained at several recent medical conferences I have attended. In those states, providers shared that the ease with which hospices participated increased significantly over time. They credit that acceptance to knowing what to expect – having a greater understanding of the safeguards included in the laws, coupled with no experiences of abuse or inappropriate use of the practice of MAID. They have been able to follow the progress of other hospices in authorized states, learning from those organizations’ experiences and seeing implementation kinks worked out, which they report has helped them decide to participate and feel more comfortable with the process.
In a recent Medscape article, Senior Clinical Director Laura Koehler is quoted about her hospice’s acceptance over time. She reports that what helped change attitudes was that there were no negative experiences; all deaths went very well. “Time and time again I’d hear that the death went beautifully,” she said. “We are no longer apprehensive, and we are comfortable with the program.”
In another article, seasoned New Jersey physician, Jessica Israel, talked about acceptance over time and shared what it was like for her to write her first MAID prescription. She acknowledged that her hands were shaking as she was writing it, despite her absolute belief in her patient’s right to this decision. She understood the magnitude of her decision to participate in his self-directed death by ingesting the medication she had prescribed and says the importance of her action has stayed with her. She reports he had a peaceful death surrounded by his loved ones while sitting in his favorite chair by his red bookcase. Interestingly, the hospice that Dr. Israel worked for at the time had initially planned to discharge this patient because they did not support patients participating in MAID, but ultimately agreed to keep him on their service, allowing him to continue to receive care from his hospice team until the end, and allowing his family to take advantage of the hospice’s bereavement services following his death.
In a column written for MD Magazine®, Dr. David R. Grube, National Medical Director for Compassion and Choices, says that “those of us who have participated in the practice of medical aid in dying have a different perspective than those who theorize about it. All of them are sincere, all are compassionate, none of them take this action lightly, and none have reported instances of regret or depression.” Dr. Grube also asserts that the practice of MAID has led to improvements in end-of-life care in Oregon where he lives. Indeed, studies of Oregon show that palliative care services spending and patient satisfaction have risen since 1998, when MAID became legal (Cain, 2016). Dr. Grube points out that this can be attributed to the fact that there are now much broader discussions of end-of-life care issues and more frequent conversations between physicians and patients about their end-of-life care wishes and goals, improving doctor-patient relationships and the awareness of, and participation in, hospice and palliative care services.
In conclusion, it is clear that there is a major role for hospice in medical aid in dying and that will be the case when MAID legislation passes in New Mexico. While hospices are not required to participate in MAID, those that choose to do so are most successful when they are prepared with good planning and infrastructure, comprehensive physician and staff education, and staff bereavement support for those caring for patients who have used MAID. It is also evident that the longer MAID is in effect, the more comfortable hospice teams and providers become with supporting those patients in their end-of-life care who choose to use this option.
Resources and References:
- National Hospice and Palliative Care Organization
- National Association for Home Care and Hospice
- Hospice Foundation of America
- Should Medical Aid in Dying Be Part of Hospice Care?, Medscape, Feb. 2020.
- A Day Like No Other: The first time I helped one of my patients die, ROI – NJ.com, Feb. 5, 2020
- Ten Facts About Medical Aid in Dying, MD Magazine on HCP Live ®, August, 2018