In Conversation: Raymond Cohen, Dena Maule and Belinda Marchese
Participate in the Transitions Project for People with Disabilities!
The end of life care system is failing many people with disabilities. Hospice Toronto knows that people with disabilities do not typically access end of life care and now would like to know, from them, why. To gather information about this they have posted a survey about their Transitions Project for People with Disabilities on their website (hospicetoronto.ca). They would like to encourage Abilities readers from across Canada to participate. It will only take a few minutes of your time to complete – but the value to Hospice Toronto will be immense – and very much appreciated. Participation is anonymous.
For many, communicating about the end of life can feel “off-limits.” But making decisions and planning for the inevitable can lift a burden from family, friends and caregivers—as well as from oneself. You don’t have to do it alone; there are organizations and programs available to help.
Hospice care provides those who are facing the end of life with dignity and the opportunity to be surrounded by friends and family in a familiar environment. But are those with disabilities afforded the same rights and access to end-of-life care as the general population?
Recently, Abilities CEO Raymond Cohen sat down with Dena Maule, Executive Director of Hospice Toronto, and Belinda Marchese, Director of Clinical Services at Hospice Toronto, to discuss the issue.
RC: You mentioned that you feel an affinity for the disability community. How does this figure into the position you now hold at Hospice Toronto?
DM: Hospice Toronto [a volunteer-based, in-home hospice and palliative care program providing care at no cost for clients and their informal caregivers] wants to provide education more broadly within the disability community regarding the issues of end-of-life care. We have been under-approached by people with disabilities who are seeking end-of-life care. In reality, I think that this circumstance may relate to an equity issue, wherein persons with disabilities believe that they do not have the same rights to access end-of-life care as everyone else because they may already receive some services.
I believe that we, as a sector, are not connecting to those with disabilities in a way that invites them to request information about—and engage—our services. In all probability, they are already receiving services and are supported by families, involved in supportive housing, or have attendant care and social workers. Perhaps they assume that because they already receive some level of support/service they are not eligible for anything further.
Additionally, we believe that most of the providers offering support services to those with disabilities may not be skilled in end-of-life care and that we could benefit from learning from one another.
Ultimately, the lack of connection and referrals says to me that we are not communicating in an effective way with people who have disabilities.
We did have one interesting caregiving experience a few years ago. A client with Lewy Body syndrome [a progressive degenerative syndrome of the brain] was referred to the hospice. The daughter, a wheelchair user, was living in supported housing and was caring for her father because she wanted to repay him for all of the years that he had cared for her. Her father was living with her at that point, and I went to visit her in the apartment [in order to film a piece for a TV program]. There was just no room to move about. It was supported housing—a very tiny space. The caregiver was in a wheelchair, her father was in a wheelchair, and you could barely move, never mind accommodate the volunteers who were also coming in. Despite the challenges, the passion that she had in caring for her father and her motivation to repay what her parent had provided for her was amazing.
So, it’s not that we haven’t encountered people with disabilities; it’s more that we haven’t met anyone with a disability who’s requested hospice services to be provided for them.
We also hope to reach out to the support staff working with people with disabilities. They, too, are going through a personal experience in the same way that any caregiver does, and they deserve the help to grieve and understand.
I have only mentioned a few but, as you can see, there are many, many layers to good end-of-life care.
BM: I recently connected with the Association for Community Living because of a caregiver study that we did. There was a marked response from the professionals working there in terms of their interest in learning more and being better able to support people. We were unaware of the lack of education available that focuses on end-of-life care within the disability community. As part of that initiative, we did provide support through information sharing and expressive arts.
RC: Caring for the caregiver?
BM: Absolutely. Grief and bereavement can surround us all, layered on top of the challenges of the multiple levels of care that someone requires when they’re dying. There’s an emotional and physical stress that accompanies it. Although I don’t like to use the expression burden of care, it does reflect this heavy emotional response and is one of the reasons that people can require—and benefit from— support. Hospice care creates resilience in the unit, whether it is a family or a formal caregiver unit.
DM: This is a huge issue in Canada. The system is failing many. In addition to the importance of communicating that palliative and end-of-life care is available to the disability community, there is also an open discussion that needs to be encouraged regarding abuse and the dying.
RC: Abuse of?
DM: People who are disabled or dying. Issues of abuse or violence don’t disappear just because someone is sick or dying; at times like this, it is exacerbated because now the abuser may be directly responsible for the care and may also experience fear, anger and guilt. It depends on how someone is dying and where these emotions take them. As medical procedures and medications continue to prolong life-ending illnesses, informal caregivers are supporting family members for much longer periods…sometimes years. This can impact the family, especially where good hospice/palliative care is not available in a timely fashion.
As an example, a colleague shared what he saw while supporting friends through end of life. He had known the couple for almost 30 years, and had never seen an abusive moment between them. However, when one partner was suddenly placed in the primary caregiver role, the longer the care went on, the more stressful this became for the caregiver, and verbal abuse began. So, it wasn’t something that was pre-existing to the situation, but it evolved due to the stresses placed on the caregiver.
My point is that the issues of abuse or violence may not exist until such time as the caregiver takes on these types of responsibilities—and the length that the stressors exist can be a factor in pushing the person to the point of being abusive.
BM: We are also concerned about how to support people with disabilities when their caregivers die… One organization that we are working with is developing rituals and routines to celebrate life and honour death for those in the disability community who have lost their caregiver.
RC: Another unique concern for some people with disabilities is that when you have an episodic disability or any number of illnesses that are disabling, you lose things over time—it can feel like dying one piece at a time, in effect. In a way, it gives rise to a state of constant grieving.
DM: And this can have an impact on mental health, leading to depression. An exercise that we use with our volunteers is to have them write down the things that are important to them, and then have them give up pieces, one by one. First, they choose what to give up and then, towards the end of the exercise someone else arbitrarily takes items from them. In this way, volunteers are able to experience losing things without choice or control in terms of what went. It’s amazing how real it can become.
We’d like to see the media help us in raising the issue of the importance of communicating about, and planning for, end-of-life issues. In particular, we want people to be aware of the importance of having access to good hospice/palliative care—for all Canadians. Unfortunately, it seems that interest from the media—and therefore the focus of much discussion—is around the more sensationalized aspects of dying, such as assisted suicide. We continue to encourage open discussion and debate of this issue at the national level.
RC: Do you have a position on that?
DM: We believe that with good end-of-life care, people will make a different choice. Our organization’s formal position is that we do not assist, nor do we provide information about assisted suicide. If someone asks, we will direct him or her to an organization with someone they can talk to, but it’s not a conversation that we would have.
RC: What do you feel are other major issues in terms of people with disabilities?
DM: The lack of synergy between the disabling conditions of aging and disability. In general, individuals, service providers, and our government agencies are missing an important opportunity to work more closely together on this to address the “silo-ing” of funding and resources. Mobility, communication and other challenges are common to both people with disabilities and the elderly population, and there is a great deal of information that could be shared.
RC: I agree. What we find is that young people with disabilities don’t like to see themselves as having the same needs as people who are old. People who are old don’t like to define themselves as being a person with disabilities.
DM: There are wonderful possibilities in terms of intergenerational support and learning. Those young kids could be helping people who are struggling with disabilities as they age. A rich conversation could happen!
BM: One thing that we are excited about in working with the Canadian Abilities Foundation on this project is the potential to let the community of people with disabilities, as well as their friends, families and professional circles know that we are here and would welcome the opportunity to be of service.
We would also like the Abilities readership to know that we are hoping to increase the number of individuals with disabilities who volunteer with our organization. We realize that the more diverse our volunteers are, the more likely it is that we will be able to provide compassionate and appropriate care to the greatest possible range of individuals and their families.
DM: With that as context, I’d like to highlight a project that we are embarking on this year called “Final Passages.” The project focuses on exploring gaps in end-of-life care for people with disabilities. We will be engaging individuals in our community through focus groups, and will be exploring opportunities to provide support.
It’s easy to assume that you know what people want, but we have certainly learned that taking a community development approach to care planning is much more effective. We work hard to engage diverse communities of every type to educate us.
To complement this, we have posted a survey on the Hospice Toronto website (hospicetoronto.ca). We’d like to encourage Abilities readers to participate. It’s a short survey and will greatly assist us in learning what is needed. to find out more about our survey or our organization, feel free to email us at firstname.lastname@example.org with the subject line “disability engagement.”
Over the past 20 years, Hospice Toronto has served 6,218 clients (directly impacting the lives of over 31,000 family members and their communities). By providing and advancing compassionate care and leadership in the volunteer-based, home hospice community, Hospice Toronto has become a recognized leader in providing hospice care and support for individuals and their loved ones. Hospice Toronto supports adding life to days through Volunteer Visiting Services, Caregiver and Bereavement Support, Expressive Arts, Children’s programs, and through Advocacy and Consultation Services.