Sue Phillips is a practicing Critical Illness/End-of-Life Doula in Ontario. She is the Vice President of the , a Regional Rep for the 聽and an active member of the .听Sue鈥檚 primary focus is individual client support and advocacy for those dealing with life-limiting illness and/or approaching death.
Devon Phillips (DP): Can you tell me about the work that end-of-life doulas do. Are there gaps currently in how we care for people at the end of life?
Sue Phillips (SP): The gap in care is emotional, practical and spiritual; it鈥檚 the nonmedIcal support. In the healthcare system it鈥檚 all about medical care for those with life-limiting illness. Many of us, baby boomers and older, hesitate to say to a doctor, 鈥淚 just need to talk to someone, I need to cry with someone.鈥� They don鈥檛 want to bother doctors with those needs and doctors are often not in tune with that, that鈥檚 not their role. So that is the what the doula provides - collaborative support.
DP: At what point in the illness trajectory do people typically contact doulas?
SP: When I first started three years ago, I called myself, 鈥渆nd-of -life support services鈥� and now I say, 鈥渃ritical illness and end of life鈥� because I have found that people tend to think that they shouldn鈥檛 be reaching out until they are closer to the end.
Dying is not an event. It鈥檚 a journey and it can take a very long time and we want to be there from the beginning, so from diagnosis. Before you get sick, doulas want to help you document your values, how and where you want to die, and those things are easier to identify when you are well. We are there at the start and right through to post death support, which includes body disposition, funeral services, family and peer support, and bereavement support.
DP: Are you usually contacted by the patients themselves or family members?
SP: It鈥檚 usually by a family member. I just had a consultation with a young woman, who is a therapist and open to alternative support, and it is her mother who is ill. Her father and mother were very uncomfortable with the phrase, 鈥渄eath doula鈥� and I suggested a focus on the critical illness support.
DP: Interesting that you use the word 鈥渁lternative鈥�. How do doulas describe themselves 鈥� as alternative practitioners? Professionals?
SP: EOLDAC is a member-based community of professionals. Doulas come from various backgrounds. Many doulas have been nurses, personal support workers, therapists, you name it. But we understand that because many people are not familiar with our work, they consider it alternative therapy.
DP: Do doulas face barriers to acceptance?
SP: We are a self-regulated organization with our own scope of practice, vision, and mission. We are not yet considered to be part of the standard support. Can someone hire a doula on a personal level? Yes. And that doula can then go to a long-term care facility or palliative environment as a private practitioner. But our goal is to be part of the healthcare circle. Everyone deserves to have a doula.
On a personal level, at the beginning of my doula training, I called the Executive Director at a hospice to ask if they needed end-of-life doulas and she said, 鈥淥h yes! Our systems are suffering in social and emotional ways and we need all the help we can get.鈥� Doors are being opened.
DP: Is there formal training to become a doula?
SP: Yes and there are many different training programs, such as through ,听罢丑别 and .
DP: What brought you to this work?
SP: I can鈥檛 really define it. I was happily retired for 3 years and then I read something about a doula course and within days I had booked the training. This is my 鈥渟oul job鈥�. I feel like can bring a calm presence to facilitate the path.
It鈥檚 very rewarding when you are able to sit with a family and help them support each other at this very tender, emotional and difficult time in their lives.
I want people to be less afraid. Who are we to say there is no beauty beyond this life? The end of life deserves as much beauty, care and respect as the beginning.
We looked after all our loved ones prior to the funeral home environment. But we have become so death phobic and many people struggle with death literacy. We had it, we lost it, and now we are rebuilding it. Most baby boomers want to die at home and we need to support people to do this. You can have a funeral at home with your loved ones. People are shocked to hear that!
DP: What are the goals for your organization?
SP: We need to normalize talking about death. End-of-life doulas provide a variety of ways to do this, such as death cafes and information sessions.
Our goal is to fill the gaps in the healthcare system so that one day, end-of-life doulas will be part of the standard circle of care. We are on a fantastic path. We are connecting with the International based in the States, and also with an , Scotland. We have a conference coming up in 2023.
Every time I do a speaking engagement, to a tiny group or a larger audience, someone always says, 鈥淐an you speak to my group?鈥� I have spoken with nursing groups, rotary clubs, the Canadian Hospice Palliative Care Association, among others.
Five years ago EOLDAC had about 30 members, largely in BC. Now we have close to 500 members across Canada. It is thrilling to be part of the growth of this profession.
This interview has been edited for length and clarity.听 Sue Phillips and Devon Phillips are not related.