When Your Loved One Chooses MAiD:

Considerations for you, your family and friends

by Carolyn Gibson Smith

Introduction

Since the legalization of medical assistance in dying (MAiD) in 2016, much care has gone into creating a process that works well for the dying person.

We know less about what friends and family may need, and support is primarily provided by involved physicians as best they can. Early research papers can tell us only a little about how this process changes the journey of losing a loved one. Whereas we are often familiar with traditional end-of-life trajectories through hearing others’ stories, the relative newness of MAiD, combined with families’ wishes for privacy, can leave us feeling unprepared for what to expect.

The hope of this document is to provide you, the caregiver, with some starting points and ideas to spark thinking for you, your family and friends as you embark on an end-of-life journey culminating in MAiD.

This document does not review the legal and medical processes involved in MAiD, which vary over time as new legislation is enacted, as well as province-to-province. For this information, please search your provincial government’s web sites and speak to your primary care provider.

This is also not a collection of first-person accounts of supporting someone choosing MAiD, but you can find many wonderful ones on the Dying with Dignity blog.

Instead, the following observations are informed by my experiences as a therapist/clinician with a special interest in supporting MAiD families, and the insights and research of colleagues in Switzerland, Oregon, Ontario and British Columbia since 2015.

Assessment

This leads us to the next phase of MAiD, whereby the patient is seeking an assessment of eligibility, usually with one or more friends or family members acting as advocate/s. Getting permission for a MAiD death is one aspect of the formal process; decisions around timing and place of death can be made closer to the time the client intends to access the procedure.

This organizational phase is critical, as once the patient is deemed eligible for MAiD, the patient can choose to schedule the procedure within days to weeks depending on how reasonably foreseeable natural death is, and how close the patient is to losing the capacity to consent. Timing will be determined in accordance with the availability of key medical professionals. Once the date has been set, a countdown clock begins. Beuthin et al (2021)’s study participants refer to the timing decision kicking off a “parade of lasts,” and a “countdown to death.”

At the same time as the logistical and caregiving demands are increasing, this period may also see your grief kicking into high gear. Setting aside time to care for your anticipatory grief is critical – remember the airplane safety instruction of “place your own oxygen mask first.” This can look like a quiet place, a walk, time to reflect near water or trees, a cup of tea with a friend – whatever works for you. Some friends and family members can become so overwhelmed they slip into “robot mode,” unable to handle the intensity of grief at this time (Beuthin et al). Others are better able to manage their distress and put their energy into creating meaningful moments to celebrate the dying person, to create ritual and ceremony, and to bring loved ones together.

Whereas some MAiD processes are a race against time in order to avoid the dreaded “loss of capacity to consent,” those of us observing how friends and family experience a MAiD death encourage slowing the process down as much as possible within the legal constraints.

This allows you, your friends and family to create ceremonial replacements for the kind of bedside vigil moments we can lose in the swiftness of MAiD deaths. Carve out meaningful opportunities to share stories, to ask for and receive forgiveness, to communicate love, and to hear the dying person’s hopes and advice for the futures of their family and friends. Future research is likely to determine that through vigil, naturally occurring or ceremonially created, people are better able to integrate the enormity of the loss that is coming, which is a critical process in healthy bereavement.

“Death is not a medical [or legal] event.
It is a personal and family story
of profound choices,
of momentous words,
of telling silences.”
~ Steven Miles, MD.
Professor of Medicine Emeritus,
Center for Bioethics,
University of Minnesota

Starting Points

The way friends and family become aware of a MAiD death are as particular as the person accessing MAiD. Some have long been advocates for the right to choose the timing and method of death, some research MAiD quietly and come to terms with it privately, and still others arrive at this decision without much forethought. This contemplation is usually influenced by new, terminal diagnoses, an upswing in suffering from the illness itself, or the side effects of medical treatments, and/or by rising fears of the loss of dignity, independence or control (Gaimondi et al, 2018).

Whether it’s a complete shock, or it feels like an inevitability, the news is the kickoff for the most unusual aspect of a MAiD death, relative to a traditional death: it presses “play” on your grief process in an early and certain way. In the words of Beuthin et al (2021), it “bring[s] the reality of pending death to life.” And with an intended death comes a series of decision points and processes that are different than in a traditional death.

Most typically, the person choosing MAiD determines a select group of friends and family they nominate to help facilitate the process and support them on their journey. They will also determine how widely they want their choice of the means of death to be shared. Whereas some see this as an opportunity to create awareness and acceptance about MAiD and share widely, others guard their privacy and choose to avoid conflict with those they suspect may not agree with their choice.

The person choosing MAiD does not need permission or acceptance of their choice by friends and family to initiate the process, nor are there guidelines about how and when to inform friends and family. In jurisdictions such as the Netherlands, family opinion is considered in these decisions, a nod to how impactful such choices can be on those who go on living (Goldberg et al, 2019).

There is no guarantee all family members will agree with the choice of a MAiD death, and a period of family mediation/reconciliation may be advisable to avoid long-lasting acrimony between survivors, either before or after the death. If before, the patient will want to share why they’ve made their choice. In addition to emotional responses, family members in turn share concerns such as the loss of valuable time with the dying person, religious or ethical objections. Engaging a neutral third party to facilitate these conversations can be important: anyone from a supportive clergy member, a hospital or hospice social worker, or an outside professional.

We know the level of agreement with the decision of MAiD predicts variability in the subsequent experience of grief (Srinivasan, 2018). In addition, if for various reasons, a patient delays informing friends and family of their impending MAiD death, it can leave friends and family members with some challenging feelings, primarily anger and resentment, to process along with their grief. This is normal, and grieving persons in these circumstances may particularly benefit from bereavement therapy.

When kids are involved….

If there are kids in the picture, you may wonder how much to share with children. The current wisdom is that kids have a tendency to overhear, and at a minimum, adults should be prepared to explain if questions arise. There are online resources to prepare you for discussions about why someone might choose a MAiD death, whether or not it “hurts,” what makes MAiD different than suicide etc.

There is a range of ways kids can be involved in a MAiD death. They can be offered the opportunity to provide the dying person with something to take along into the procedure, for example. Or they may be interested in attending – this is very dependent on the age and temperament of individual children and it’s wise to let them decide, and even change their minds and leave if it feels like too much. In any event, having a safe adult to stay with your child or teen around the time of the procedure, if they’re aware it’s taking place or in the room, is a good way to ensure they’re receiving the support they need while you are involved in the death.

This is also the time to consider organizing any moments or ritual for immediately following the MAiD death, as well as the broader mourning needs of the communities surrounding your loved one, from small intimate gatherings to more traditional funerals.

Whereas we know that the dying person finds tremendous relief in knowing a MAiD death is possible, and that dying people undergoing MAiD appear confident in their decisions, friends and family members report conflicting impacts on themselves. It’s true that organizing a MAiD death means extra responsibilities, and additional considerations around the story of the loved one’s death. For some, the sense of preserving dignity, alleviating suffering and the humaneness of the procedure outweighs those impacts, for others, less so.

The day of…

People accessing MAiD may have some clear ideas of what “lasts” they’d like on the day of the procedure – from last meals, to last visits, to time with close family and friends. Some feel less ceremonious and want no fuss or planning at all. In all things, we strive to make this last day whatever your person wishes for, while making room for family and close friends to take the moments they need.

Your physician will hopefully have walked you and the dying person through the steps of the procedure in great detail, and will again on the day of. Asking what you can expect to witness will make sure you’re prepared. Always, the choice remains with the patient about whether or not to proceed up until the last moment.

Some people find the procedure itself to be less traumatic than other deaths they may have witnessed, with the distress of caregivers being higher than those of the dying person. Most people report being amazed at how quickly the death happens once the procedure start, and how calm it is.

Afterwards

After the death, there is no rush. There’s time to sit with your loved one, and reflect on the momentousness of this transition. Meanwhile, the doctor will be busy with paperwork, and it’s good to know the cause of death on the death certificate will be indicated as the underlying disease process, thereby simplifying any concerns around insurance.

We do not yet have the kind of longitudinal studies that tell us whether grief is better or worse with a MAiD death vs a traditional death. I’ve observed that those who felt shame about or betrayal around the choice of a MAiD death struggle more than those who felt supportive and aligned. Whereas everybody seems to need to be mindful about who they share their experience with, those who don’t feel comfortable telling anyone are essentially deprived of a community to support them in their grief; grief becomes an isolating experience.

Volumes have been written about grief in general, and MAiD grief is ultimately just another flavour of grief. Where it becomes an important element is as you are seeking support for your grief. In choosing a bereavement counsellor, ask about their comfort with, and experience in, supporting those whose loved one has chosen MAiD. Similarly, if you are joining a grief group, see if you can find one, even online, that’s specific to MAiD. Alternately, you’ll want to ask how the facilitator handles the question of MAiD and decide for yourself how open you need or want to be about the method of your loved one’s death.

References

Beuthin, R., Bruce, A., Thompson, M., Andersen, A. E., & Lundy, S. (2021). Experiences of grief-bereavement after a medically assisted death in Canada: Bringing death to life. Death Studies, 1-10.

Gamondi, C., Pott, M., Preston, N., & Payne, S. (2018). Family caregivers' reflections on experiences of assisted suicide in Switzerland: a qualitative interview study. Journal of Pain and Symptom Management, 55(4), 1085-1094.

Goldberg, R., Nissim, R., An, E., & Hales, S. (2019). Impact of medical assistance in dying (MAiD) on family caregivers. BMJ supportive & palliative care, bmjspcare-2018.

Srinivasan, E. G. (2018). Bereavement experiences following a death under Oregon’s Death with Dignity Act. Death Studies, 1-9.