What Do We Do?
What Do We Say?
The Kinwood Guide to MAiD Preparation (for families & loved ones)
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Bridge C-14 provides compassionate support to families throughout their journey with Medical Assistance in Dying (MAiD).
ⓒ2022, Kinwood
Introduction
This guide aims to offer straightforward advice on how families and friends can prepare in advance of MAiD. We encourage you to personalize this approach to best serve your circumstances. This information is not medical in nature and should not be substituted for advice from your physician or a medical professional.
Family and friends may feel a range of emotions leading up to their person’s MAiD. This unusual situation brings opportunities for individuals and their supports to prepare for MAiD and gives them the ability to have choice and control over the environment for the day.
Every death is different. When preparing it is important to understand that often things go as planned but some do not. While the experience of being present for an assisted death can be peaceful, some moments may be distressing. Preparing for your person’s MAiD can help ease the experience.
Where To Start: Establish Goals
When you think about the non-medical planning for MAiD, it’s helpful to start with identifying goals, including your wishes and hopes for the experience, and to discuss roles for family and friends. Defining your goals, or how you want people to feel or what you want them to experience, can act as an anchor and help you to prioritize what is most important. Many families find it helpful to identify someone close to the person choosing MAiD to take the lead on non-medical considerations. This person will also be an important spokesperson in the patient’s circle of loved ones. This guide will refer to the lead role as the patient’s spokesperson – or the MAiD spokesperson.
What is possible in the time prior to MAiD, and for the individual’s MAiD itself, will be largely dictated by the person’s health, mental and physical capabilities. Some patients will not be mobile and may have difficulty communicating with others; the wishes of the individual need to be considered in this context. Goals can be as wide-ranging as seeing friends and family, visiting a special place, or focusing on comfort and pain management. There can be several goals, but make sure they are achievable within the time you have.
ENGAGING WITH THE PATIENT:
The MAiD spokesperson may consider having a conversation with the individual about their most important wishes prior to MAiD. Some of these wishes may include a drive by an old home, visit with special people, or sharing stories with younger family members. Consider the person’s physical and mental capacity when exploring goals and consider how creativity and technology might help. For example, not everyone will be able to travel; perhaps watching videos or preparing a meal that reminds them of the experience can come close.
Friends and family often need their own support, even if they will not be present during MAiD itself. Try reaching out to friends and family to see how they would like to be involved in the time leading up to MAiD, keeping in mind the wishes of the person who is having MAiD.
It’s important to establish who the patient would like to see in the time before their MAiD procedure. Friends and family may wish to prepare something to say goodbye. If a personal visit is not possible, consider writing a letter or sending a photo to be shared with the patient. Some families have described this time with their loved one as a special gift. Other wishes can vary from seeing a grandchild performing a song, to reading old letters, or viewing a photo album. Today, ZOOM-type technology allows people to connect from anywhere.
Lauren Clark, President and CEO of Bridge C-14, advises “Everyone is different, and some individuals will not want to engage, or do or say the things that you plan for.”
Establish an after-death plan:
A few days in advance of MAiD, contact a funeral director to arrange for the transportation of the remains. Many people find it comforting to spend time with their person’s body so they plan for this in advance. This time with the person can help make the death real and allows time for people to say goodbye. You may want to consider reading a poem or prayer, playing music, or sitting in contemplative silence during this time.
Children:
As a practicing social worker and through her work at Bridge C-14, Lauren Clark has significant experience helping families navigate through MAiD. “There are no age restrictions on who attends a MAiD, but involving children is a personal parental decision. Children are resilient and we advise parents to talk to their kids about MAiD in a transparent manner as they would for any other family or health topic.”
MAiD Day: Specific Considerations
What to wear
Wardrobe: If the patient is able, they can determine what they would like to wear. For family and friends, wardrobe should be akin to going to dinner with your loved one. Wearing something familiar will make everyone feel more comfortable.
Food
Notwithstanding medical or dietary considerations, a special meal or snack in the lead-up can be planned. The MAiD spokeperson should plan menu, location, and any guests. For the individual’s supports, it is important to stay hydrated and nourished during this time. Some people like comfort foods or special drinks that remind them of good times. The MAiD spokesperson can arrange these foods and beverages in advance.
End-of-life consultant, death doula and Bridge C-14 Advisory Committee Member Chelsea Peddle adds, “They may want a last special meal. Some people are unable to swallow or eat a full meal by this time, but a little taste can still summon happy memories and comfort”
Room Preparation
The MAiD spokesperson needs to establish an atmosphere for the room that aligns with the individual and their guests. The atmosphere is an important consideration and will dictate the mood in the room in the lead-up to the procedure. Some will choose to include spiritual or religious items to surround the room, while others may wish for a more unique and personal take. Simple décor such as flowers and photographs are also options. The MAiD spokesperson can develop a plan for the room that includes music, important photos and possessions, and lighting (natural or room).
In advance of the procedure, the spokesperson is encouraged to discuss with the person who is having MAiD and those who will be present where they want to be positioned in the room. After allowing space for the set-up, “Some people may want to sit on the bed, while others stand to the side. Talking about this in advance can help people feel secure and avoid any hurt feelings,” says Chelsea Peddle, CircleSpace Founder.
Managing visitors
The person choosing MAiD and their MAiD spokesperson can discuss managing visitors on the day of MAiD. Some individuals may choose not to have any visitors and others may wish to see as many people as possible. Guests should have the benefit of knowing the environment they are encountering. The MAiD spokesperson can brief guests on the mood, what to expect, and any other considerations so that guests can support the atmosphere in the room. The spokesperson can establish a small waiting area outside the room for guests to be welcomed and briefed.
Pre-briefing the medical team:
A Doctor or Nurse Practitioner is often entering a location with an already established energy and mood. Occasionally, a doctor can arrive in the room and unintentionally disrupt the environment with small talk. The medical team wants to support the patient’s MAiD plan and briefing them in advance will help everyone. If that is not possible, the MAiD spokeperson should brief the medical team prior to their entrance to the room.
During MAiD
As the medical team prepares “it’s good to understand that the procedure requires a fair amount of set up, and often multiple syringes are used. This can be unsettling for some”, says Lauren Clark. During this time, the MAiD spokeperson will have gathered the selected group in the room in a way that has significance to the patient. Once MAiD begins, death may occur quickly, or in some cases take several minutes. “Prepare for all possibilities” says Lauren –“Some individuals may also choose to be alone for MAiD which can be upsetting for those in their support network.”
Post MAiD
After MAiD, some attendees describe the experience as beautiful – and refer to the feeling of “presence.” Many people find it comforting to spend time with the body and share contemplative silence during this time. The MAiD spokesperson could prepare a statement or choose a poem to acknowledge the truth or spirituality of the moment. The spokesperson, in keeping with the after- death plan, will ensure guests understand the time they have prior to transportation of the body.
GRIEF & Support
When an individual makes this complex end-of-life choice, they, and those around them, can feel isolated and unsupported. Many are unsure where to turn to connect with others who have lived experience. Without a place to voice their grief, many are left to navigate MAiD alone and without community support.
Since 2017, Bridge C-14 has created a network to build meaningful connections of support through all stages of assisted dying across Canada. Bridge C-14 was founded on the need for access to peer-to-peer support for those with lived experience. Bridge C-14 is committed to creating a culture where dignity, choice and grief are honoured and valued. They seek to bridge the gap between the MAiD event and compassionate grief support.
How To Celebrate The Life?
Part 1: It’s about the details
For many people the task of encapsulating a loved one’s life is a challenging exercise. This is not unique to MAiD – and in fact, many families struggle with writing a thoughtful tribute or obituary. This is all the more difficult as the author is often experiencing grief themselves.
Grieving vs Celebrating
To grieve a life and to celebrate one, are different endeavours and should be approached differently.
Grief is often associated with personal and specific emotions of loss, sorrow and sadness. When trying to articulate grief – questions should include:
- What values were passed along to me?
- What were the best times I spent with my person?
- What attributes were passed on to our family?
- What did this person mean to my children?
- What were the unique qualities of this person as a parent?
- How will I always remember them?
- What specific things are you most thankful for?
If you are coming to terms with a loss or preparing to say goodbye – saving the answers to these questions will help you capture your emotions and be a resource through your grieving process.
Celebrating the Life:
If capturing grief is a largely personal exercise, celebrating a life is outwardly focused on the identity of a real person with a unique life story.
Questions should be orientated to the attributes and accomplishments of the life.
- How would my person’s best friends describe them?
- What are the person’s proudest personal moments?
- What footprints / what accomplishments did they leave in her life?
- What knowledge did they have?
- What unique skills did your person have?
- How did they deal with adversity?
- What did they teach others?
- What made them laugh? Were they funny?
You can use these questions to set up your own inventory of content to structure a narrative and celebration of the life.
Part 2: How to capture content
While there are many companies on the internet that can help you compile an online memorial- there are also many familiar tools available for support.
Write it down
Capturing your thoughts via the written word can be therapeutic for many. Whether in a notebook, computer or even typing it up on your phone – documenting your thoughts through this time has great value.
PowerPoint / Google Slides / Keynote
Odds are that someone in your circle has some experience in using one of these common slide builders. This is an easy way to combine photography with written material that family members have contributed. These slide builders combine ease of use and flexibility to organize and reorder content. It is an effective way to share on a tablet or you can have them professionally printed.
Video Recording
Today, many mobile phones can capture high quality video and audio. Stories, oral histories, personal messages, or recorded video from special locations are several ways that you can capture personal content with a mobile phone. Keep in mind that video content files can be large and become difficult to share.
Video conference
For families who wish to connect in a live setting with friends and family – there are many free and easy to use video conference software options (ie Zoom and Google Meet).
Professional Help
Kinwood produces beautiful family films, oral histories, personalized Kinwood Obits, and other tributes that become important family heirlooms.
Click here to learn more.
Final Thoughts
This guide was intended to offer straightforward advice on how families can prepare in advance of MAiD. If you are supporting a loved one through MAiD, we hope you have found this content valuable.
Kinwood has a range of professional services to help families honour a remarkable life. Please reach out to us at ask@kinwood.ca