Sonya VanderVeen Feddema: an interview with Tina Van Egmond
When I heard Tina Van Egmond speak to members of my church community about her position as Director of Care at Hospice Niagara, I was intrigued by her career and how her Christian faith impacted her work. In an email interview, I asked Tina to share her story.
Hospice Niagara's Therapy dog at work.
Stones with messages from thoses who have walked with someone with a life-limiting illness. The words represent a shared philosophy that every life matters.
Hospice clients are given a day with caring companions, entertainment, and relaxation, enabling caregivers a day of respite.
The Stabler Centre in St. Catharines is Hospice Niagara's residential hospice that provides care in a home-like setting. A caring team supports those who stay there.
Christian Courier: How did God lead you to this position?
Tina Van Egmond: Being the oldest child in my family, I took care of my siblings and enjoyed helping others and listening to people who needed comfort. I naturally gravitated to a career where I could care for people. I enjoyed completing my Bachelors of Applied Science degree at the University of Guelph and knew that I could use it to help people, but when I was nearing graduation, I realized that I valued a more holistic approach to providing care and became interested in nursing. From my first day of nursing school at Mohawk College, I felt I was exactly where I should be. I was excited about learning and quickly realized that nursing would enable me to use the gifts I’d been given.
Part-way through my nursing career, my brother-in-law died suddenly. This was a pivotal time for me to reflect and see what mattered most in my life. I helped my family and friends grieve this significant loss, while grieving myself, and found that this not only brought me great comfort, it also helped me to grow personally. I felt a deep desire to help others when they experienced death, dying, grief and loss.
Throughout my career, with every transition into different areas of nursing to where I’m today, I’ve been blessed to care for those who are in need. Is it easy? No. Is it rewarding? Very! My career helps me to keep things in perspective. When you think that it couldn’t be any worse, that’s not true. Every day, people experience challenging times and I know I’m here to help them in the best way I can, with God’s guidance and comfort.
What are your responsibilities?
I manage the 10-bed residential hospice, the Stabler Centre, in St. Catharines, Ontario. In this role I work with a team of experts to prioritize admissions into the residence and support patients and loved ones, ensuring they have the support and care they need as they transition into the residence, during their stay, and following death.
I work closely with the Medical Director and Executive Director, as well as leading the interdisciplinary team of RNs, RPNs, PSWs, a Supportive Counsellor and specially trained volunteers.
My work goes beyond the walls of the Stabler Centre, as I collaborate with community supports to help people and families to transition to hospice and other care settings at end-of-life.
I provide education and support to staff, community coordinators and nurses, along with education to the families that contact me. It’s important for everyone to have an end-of-life plan that addresses wishes and wants. I help people to articulate these wishes and wants to their family members and facilitate access to the right services at the right time and place.
I’m also an advocate for change, to ensure that hospice resources are available in every community in Niagara, as close to people’s homes as possible. As well, I’m an active participant in Hospice Niagara fundraising activities. This helps me to make a real difference within my organization, which is funded only for 60 percent of the costs needed to maintain our current programs and services. It also provides me with opportunities to speak with as many people as possible about palliative and end-of-life care, to dispel myths and to recruit volunteers for our organization. I believe everybody can make a difference, even in small incremental ways.
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families when they are living with a life-limiting or terminal illness. It focuses on prevention of side-effects and relief of suffering. Palliative care addresses a person’s whole self, not only the medical needs they might have. It helps to alleviate emotional suffering, supports people with their spiritual and instrumental needs (such as caregiver support), and helps family members cope with providing care. Care is provided alongside of treatment and helps support family members with their bereavement and loss.
Hospice Niagara uses a team approach to care and volunteers are vital members of the team. We work to enhance quality of life and, in conjunction with other therapies (such as chemotherapy and radiation therapy), work to prolong life.
Palliative care can be provided in any care setting. It’s not a place. It can happen in hospice, the hospital, an individual’s home and long-term care homes.
Have you encountered patients who are seeking medical assistance in dying (MAiD)? If so, what is your response?
My response is to listen. Often when people express this, it isn’t always a request for medical assistance in dying, but rather a desire to seek understanding of what to expect as their disease progresses. The interdisciplinary team and I provide education and support, and also explore the root cause of this conversation. There’s often a misunderstanding of palliative care and how this approach works to relieve all suffering. When faced with a life-limiting illness, many people fear they may lose control. Providing them an opportunity to have involvement in their decisions from diagnosis and empowering them to have autonomy is so important in promoting quality of life.
Hospice Niagara supports and respects all personal end-of-life decisions and plans. We promote palliative care, which neither delays nor hastens dying. We believe that by accessing a palliative care approach, suffering (including fear) is managed and quality of life is obtained. However, we recognize that some people choose MAiD. Although we do not provide this service at Hospice Niagara, we respect people’s choice through access to our community programs including bereavement for family members.
I recently reviewed On Living by Kerry Egan, a hospice chaplain (Christian Courier, April 10, 2017). Egan mentions that there are many myths surrounding the dying, pointing out that they aren’t more heroic, wise or noble than the general population, nor are pearls of wisdom and love usually spoken in people’s dying breaths. Rather, she points out, “The dying are just people, like you and me, who happen to be doing something we’ve never done. To die is a verb, like to jump, to eat or to laugh. It’s something people do, not who they are.” Do you agree with her?
Often in health care, once patients have a diagnosis, they’re labelled as their diagnosis or as “palliative” when there are no further treatment options available. People are people, no matter what their diagnosis. They are husbands and wives, fathers and mothers, brothers and sisters, uncles and aunts, cousins, friends and colleagues. They have a unique life story to share. Dying doesn’t make them more heroic, wise or noble, but just more acutely aware of what matters most to them without the distractions of daily life.
They may want to do things that they haven’t done yet. I once had a patient fly back home overseas to be with his family from whom he’d been estranged for several years. He died a week later and the family was so thankful to spend this time with him. I also had a patient who was a strong community leader in his professional life. Once he and his family experienced the benefits of palliative care and residential hospice care, he wanted to share his learning and experience. He and his family became ambassadors and were interviewed by local newspapers and recognized by Parliament. I have also seen patients get married in their hospice beds, and have birthday and anniversary celebrations and baptisms. Many people want to pass on their knowledge and do so by legacy sharing, videos and letter writing. They do all of this as they acknowledge a life lived. Hospice Niagara staff and volunteers help people to live out their wishes.
As a Christian working in hospice care, you meet people of many different religious faiths or practitioners of no faith at all. How does your daily walk with Jesus shape the way you relate to each one?
I’ve learned to try to meet individuals where they’re at, not where I want them to be. It’s so important to listen, have patience and keep an open mind and heart. Living is hard work. Dying is hard work, and dying is a part of living. Knowing that I’m privileged to support people until the end and to bring comfort and support no matter what their religious or spiritual background is important. We’re all made uniquely in God’s image and have gifts to share as we live and learn from each other.
At Hospice Niagara after someone dies, we have a processional as they leave us and the building. This is a time where we can reflect on the person and family for which we provided cared. Each person and family is so unique and this is a time to celebrate their personal journey.
What challenges do you encounter?
Palliative care is not something that people, including health care providers, feel comfortable talking about. The biggest challenge is that often it’s not talked about early enough with patients and loved ones even when treatment options may be coming to an end. This presents challenges as important discussions and choices are delayed, creating crises for people and families. Dying, however, when we know it is coming, should not be a crisis. When information is provided early and palliative care begins early in the illness trajectory, positive outcomes can be supported throughout an illness, not just in the final moments. This also helps family members in their grief and loss, to know that their loved one received the best care at the best time.
As well, when patients transition between care settings this poses a challenge as communication is often lost. Having a system where teams can follow their patients between care settings and provide support where care is needed at the right place and time is important. Often patients go to the hospital to have the benefits of an interdisciplinary team around them. Having these team supports in the community would enhance care provided in the community where 75 percent of patients prefer to be, as well as present significant cost savings to the health care system.
Finally, lack of awareness of palliative care continues to be a challenge. Palliative care would benefit from a public health approach by developing a wider community context in which palliative care services can make their contributions. This would include educating everyone that death is normal. A public health approach takes the responsibility of palliative care from a few highly trained specialists to a community that considers it “everybody’s business.”
How is your work rewarding?
It’s a privilege to walk alongside people and their loved ones in their journey, be it a short or longer time, and to celebrate everyone’s life. It’s a privilege that people and their families allow me to be a part of a very intimate time in their lives where they are vulnerable and are trying to navigate uncharted territory.
How have you experienced God’s presence in your work?
I experience this every day in my work. It isn’t just happening in the residential hospice building, but in the community as well. I see special moments shared between people. I see it in those who volunteer their time, support the organization through donations, or who take time to plan fundraising events for our services. All of these experiences transcend walls, cultures and religions. It’s the common thread of caring and giving of one’s self that tells me God is present every day at Hospice Niagara.