The first in a series…
What does Hub Hospice Palliative Care do? Who exactly do they help? Do they go in and cook lunch for people who are sick? Do they take people to doctor’s appointments? Are they medical personnel? And what’s with all those fundraisers they hold?
The Board of Directors of HHPC has identified a need to explain clearly to our community what the purpose and goals are of this organization. To that end, I have been tasked with interviewing various members of the Board and other stakeholders.
Over the next few weeks we will publish a series of articles aimed at shining a spotlight on the organization.
Our hope is that our mission will be made clear — first and foremost, to people who may need our service but also to people who may want to support HHPC, be it through volunteering (there is lots of opportunity, not just as a visiting volunteer) or through financial support.
— W. Rampton
A Conversation with Jane Henderson, HHPC Chair of the Board of Directors
Jane has had a long-term interest in palliative care. With a degree and master’s degree in nursing from McGill University, many years’ experience in acute care, nursing administration, and long term care in Lanark and Renfrew Counties, Mrs. Henderson brings a wealth of knowledge and experience to her role.
WR Your organization’s material states that Hub Hospice Palliative Care is “a hospice without walls.” Can you explain what that means?
JH We bring our services to the client. Our specially trained volunteers will go to wherever our client is. That could be their home, their retirement home, a hospital or palliative care facility, or wherever they are being cared for. An important aspect of our service is that we “move” with the client as well if need be. For example, we may start out supporting our client and their family at their own home, but if the time comes that the individual needs to move into hospital, we will simply visit them there. This ensures that at least one aspect of the client’s care is consistent…the same volunteers with whom they have formed a relationship continue to offer their support.
Studies show that the vast majority of people would choose to die at home, but the reality is that more than 70% die in hospital.
We endeavour to be part of the system that can change those outcomes.
WR Is this model one that works well for your clients?
JH Our feedback has been positive. We fill a gap that has been identified with a holistic approach to care and support for people facing a terminal illness.
WR Can you tell me a little bit more about who your clients are?
JH We are here for anyone who has been given a terminal diagnosis. This does not necessarily mean that death is imminent. We stay with our clients as long as they need us. A terminal diagnosis understandably leaves people stunned — the individual and also all of the people who love them.
Alan Mirabelli, one of our clients, invited the public to a presentation in Almonte in November 2017. He described the impact of a terminal diagnosis so well. He said: “The metaphor I have used to describe this journey is my life being a run-on sentence… Then suddenly I got that call [of a terminal diagnosis] and it was like somebody put a comma in that sentence. That’s what I felt. In seeing that comma — which was my diagnosis — I was at a point of choice: What am I going to do after the comma and before the period?”
That is where we come in. Between the comma and the period.
I would like to mention also that we serve anyone over the age of 18. This is not just a service for seniors.
And it doesn’t end with the death of our client. We offer up to a year of continuing bereavement support for the family if they wish it.
WR There are already services in the community that help people who are in palliative care, such as the Home Care Services through Champlain Local Health Integration Network (LHIN) (formerly the CCAC) and Mills Community Support, to name just two. How is HHPC different?
JH Yes, there are wonderful services in our community. There is also the Civitan Club who provides hospital beds and the like; we have meals on wheels; the library has a program for choosing books for people; there is a wonderful program through the paramedic services in Almonte. But there was a gap.
By offering a holistic person-to-person, family-centered approach we seek to enrich this stage of a person’s life. This can entail some very practical aspects such as helping to navigate “the system.” It is hard to imagine how difficult it is for someone who has just been told they are dying to find the concentration needed to make their way through all of this, and it can be just as hard for their loved ones. Our registered nurse, who runs the program assesses the situation and helps with those contacts, so this is really important.
But a very big part of what we do is less concrete. We offer a neutral, confidential ear. Some clients may want to talk about their life or family, their fears and concerns, or perhaps regrets. They may need help to reconnect with an estranged family member or friend, or want to write letters to the people they will be leaving behind. There may be things they want to get off their chests but don’t want to burden a spouse, parent or other family member with the information. Our volunteers are well-trained listeners.
Sometimes it is a bit more lighthearted — perhaps it is just someone who will play cards or music, or read or arrange for a visit from the library. Someone who isn’t themselves crushed by the diagnosis, offering a bit of a reprieve from the sadness. Someone who can give the client’s caregiver a break.
Our volunteers are trained to support the caregiver, too. The emotional and physical toll on a caregiver, especially when there is a long illness, can be profound. Again, on top of the practical aspects of dealing with their loved one’s medical appointments and daily needs, they have to find a way to cope with their own emotions and needs. Anticipatory grief is an example of something they may want to discuss with an informed and neutral person in complete confidence. It is so hard to find someone you can talk to about things like that. Most of the focus is on the person who is ill, so caregivers may feel that talking about this kind of thing is a burden for family and friends who are also sad and scared. Enter our HHPC Coordinator and volunteer.
WR It has been 5 years since HHPC became incorporated. Are you happy with the growth of the organization in that time?
JH So happy! Our growth has been steady and positive. We feel that people are coming to understand what it is we do more all the time. We have people who approach us to become volunteers and board members. We are humbled and grateful for the growth in donations and support of our fundraising efforts. Every new service goes through a period of growth and legitimization. This is especially true when the service is directed to a taboo subject such as death. We are well on our way. The more people are aware of what we offer, and the more support we gain, the more people we will be able to help. Ours is a community that displays a lot of compassion.
WR Are there particular areas where you would like to see more growth?
JH Yes. We are working hard to expand our public education outreach. We want to increase public awareness of the piece of the puzzle we fill in supporting people in their end-of-life journey. We also are working on the continuing growth of programs such as bereavement support and advance care planning.
WR I know you do quite a bit of fundraising. Why?
JH Yes. It does seem that everyone has a hand out, doesn’t it? We have no choice — we are 100% funded through donations, with the exception of a few grants that we apply for and are awarded. For example, we have been the recipients of grants from community organizations that helped pay for our visiting volunteer’s training.
WR How are the funds used?
JH We operate on a budget of about $100,000 annually. The largest percentage of that goes to salary and benefits to our two part-time registered nurses. We have insurance costs and bookkeeping and accounting of course. We keep our office expenses as low as possible. In fact, we are very fortunate that we do not need to pay rent for our office. There are some costs for advertising our fundraising efforts and our programs and events, but thanks again to dedicated volunteers these costs are only a small percentage of the budget. The rest goes to program development and to making sure there is a reserve fund in case of need in the future.
WR Will there ever be a bricks-and-mortar hospice building in Mississippi Mills?
JH The reality is that the Ministry (Ontario Ministry of Health and Long-Term Care) has very strict rules on how health service funding is allocated. At the present time hospice facilities are awarded to more densely populated areas. There are three options for people in our area: some people choose to die at home; some people choose to die at a hospital —Almonte or Carleton Place. Others choose to die at a hospice and are referred to the facilities in Renfrew or Kanata. The hospices in Renfrew and Kanata provide expertise in palliative care, but they may not be considered home, and the travelling required only adds to the stress a family is already experiencing. Whatever the person’s choice is, HHPC can continue to be flexible and maintain contact with the client and their family.
WR What are you most proud of?
JH Everything. Our volunteers, our staff, our community, our directors, our supporters. Our growth. And, I feel that our team of directors, employees and volunteers are establishing a foundation on which this organization can continue to build.
WR What do you have on your wish list?
JH That one day, our society will honour terminal illness and death as much as we honour pregnancy and birth. That the awkwardness with which we talk about this huge event that is, after all, going to happen to all of us, will be smoothed out. I would like to see a day when we are no longer nervous to run into someone who is going through these difficult times because we don’t know what to say. It is as though there is a stigma around being a person who is dying or the family of a dying person. This causes such feelings of isolation in the people who are going through it! I believe that the only way to achieve this — as with so many things — is through education. It begins with us. It begins with talking about it.
About Hub Hospice Palliative Care
Hub Hospice Palliative Care (HHPC) is a not-for-profit registered Canadian charity funded through donations and targeted fundraising initiatives. We are a “Hospice without walls.” We provide in-home palliative care support for adult clients and their families (personal residences, long-term care homes, retirement homes or hospitals) in North Lanark.