Monday, October 3, 2011

Hospice: Compassionate Support on Life’s Journey



Allyson Tufts and Andy Forgie entertain.
Luke Hendry/The Intelligencer/QMI Agency
As I began to explore hospice care with a neighbour of mine, memories of my own experiences began to flood in; sponging the mouth of my great aunt, reading her favourite poetry to her, and the gentle touch of the nurse when it was time. I also clearly remembered the time when I was present as my father was facing his end of life. As I recounted my experiences, me the interviewer doing all of the talking, I paused and realized that I was really being listened to. Across from me was Bonnie Delaney, Executive Director for Hospice Quinte and a true face of compassion. She said, “The patients I have been involved with have taught me so much about grief.”
The Belleville area had the first freestanding residential hospice centre in Ontario. Hospice Quinte has grown to over 125 volunteers participating in an excellent home care program. Bonnie is well aware of the exhaustion with home care, both physically and emotionally, and that is where hospice comes in. With the right care for both the patient and the family, with support and the needed medical equipment, the patient can live at home in comfort. That is what hospice is about, says Bonnie, “care for the living”.
Nancy Parks, Executive Director Hospice Prince Edward, agrees. Of paramount, “we must provide support for the patient and the caregiver.” Hospice care is confidential and quiet. She says, “We are a death denying society, there is much educating to be done.” Anticipatory grief begins with the diagnoses, and hospice is there to provide the much needed grief and bereavement support while also acting as an advocate for the family.
At times it is true that unless people need hospice services, they are generally unaware of hospice and all that it can do. The overall cost of allowing people to live at home is 50% less than if they were in hospital, and once diagnosed, people just want to go home, to the comfort of their own familiar surroundings. Long time County resident Bob Norton now knows the benefits of hospice care. His wife, Debbie, was admitted to a residential hospice facility in Cambridge Ontario at her end of life journey, and Bob was witness to the compassionate care of hospice. When Bob learned that Hospice Prince Edward was establishing a residential hospice in the County, he was so inspired by the care Debbie received, he committed to donate $100,000 to the project in her memory. The Rotary Club of Picton is also in support of this project and is committed to helping Hospice Prince Edward build this facility which would offer families in the area an alternative to hospital care for terminally ill patients.
Health professionals are more than aware of the benefits and the services hospice has to offer someone who has been diagnosed with a terminal illness and those patients are encouraged to get hospice involved as soon as possible. Furthermore, although hospice is partially funded through the Local Health Integration Network, approximately 70% of the operating budget comes from donations and fundraising in the local communities.
Referrals for hospice care come from the Community Care Access Centre, Community Nursing Agencies, Physicians, Clergy, family members, friends and even the patient themselves. Anyone can make a referral.
Hospice provides active and compassionate care to the terminally ill in our community, primarily providing comfort measures to the patient, particularly with pain and symptom management. They are trained to identify which services are required, the equipment and supplies needed and the support and companionship necessary in an effort to improve their quality of life. Often, the right services and equipment provided in the home can prevent the patient from being admitted to the hospital. All of the hospice services are provided free of charge.
Who are hospice volunteers? What do they do?
Many of the volunteers come from people who have used hospice services in the past. Hospice has professional staff on hand to provide training for all of the volunteers. This training covers everything from what to expect, philosophies, advance directives, basic nursing techniques and body mechanics. When the training is complete, the volunteer then decides in what capacity they can best serve hospice.
The volunteers are carefully matched to ensure that the needs of the patient and family involved are being met while at the same time remaining a gentle presence. “It takes the dedication of many people to coordinate hospice care.” Hospice Quinte
Nancy tells of a retired gentleman, ‘John’, who worked in the financial sector. He learned about hospice care, decided to become a volunteer and went through the training. In the end, he wasn’t sure just what he had to offer hospice patients. One such patient receiving hospice care was advised by her physician to ‘get her affairs in order’. What did that mean? Wills, estate law, funeral arrangements. She was overwhelmed and asked the volunteers if they knew what she was to do. John was asked to assist the patient, and he soon realized how his many years of experience working within the financial sector could now help people with these end of life decisions. This is hospice.
Nancy tells of another local, facing a terminal illness which prevents her from travelling. A close family relative is to be married on the East Coast of Canada. It is the wish of the patient to see the wedding. Hospice steps in and arranges for a big screen TV which is donated by a local business and with the help of many volunteers, and Skype, the patient experiences this unforgettable life moment. This is hospice.
Another story, from Bonnie, tells of a man diagnosed with cancer who was in the care of hospice and he had a wish. He wished that he could paint. The volunteer coordinator knew of someone that could help, a volunteer who also was a painter. The match was made and the patient had his wish fulfilled. This, too, is hospice.
Deborah Kimmett is an author, public speaker and hospice volunteer. After the death of her father, Deborah took a course on palliative care and she then reflected on how she could best contribute to hospice. She was approached by hospice to teach the communication piece of the training for the volunteers. “There was just something missing in the way we communicated,” she says. She teaches that there is comfort in talking about life’s journey and death openly.
“In caring for a loved one, there are not too many places for you to put your grief. It just gets swallowed up by the mechanics of caring for your patient.” Hospice can help care for the caregiver. It knows care giving can be exhausting and it is there to provide support and help alleviate some of the stress. “If you get hospice involved, you will significantly enhance the quality of your care.”
Deborah created the video Talking To Sick People (Walk a Mile in My Backless Gown), which takes a humorous and compassionate approach to this important issue around communicating with someone facing a terminal illness. What do you say when you don’t know what to say? When we are afraid, we bring that to our care giving. Deborah’s work is invigorating and interesting. She asks ‘how do we listen?’ Further, “how do we honour the privacy of the patient and family, how do we honour this journey?”
With the help of volunteers like Deborah Kimmett, “more people are understanding hospice palliative care.” says Bonnie. “People go home to live.” Palliative care can be a long journey; the end of life is just a small component of this entire journey. Hospice care is about assisting people in living every moment until they die. Let’s face it, that is what life is about for all of us. “We need to lead the way.”
See the fall issue of the County and Quinte Living magazine online at