A better way to deal with terminal illness

By Sharon McLeay Times Contributor

We watch poignant endings in movies, where the character is dying. We listen to talks and read material about the importance of discussing our wishes with family members, should a terminal illness or death hit the family.
But do we really feel comfortable about the realities surrounding terminal illness?
Dr. Katherine Arnup of the Vanier Institute, in her paper on Death, Dying and Canadian Families, states that silence and denial that surround death and dying in contemporary culture are having a dramatic impact on individuals and families in Canadian society.
Our society is geared toward youth and vitality, which is reinforced by media and health programs, leaving discussions about death and dying out of our daily lives and conversations. People turn away from the discussion about the realities of someone else providing services such as feeding, bathing and toileting. We are unsure how to preserve a loved one’s dignity and deal with extra pressures while meeting our other responsibilities.
Unless these discussions and care issues become more common, these events will continue to hit our homes and family dynamics, and hit them hard, leaving everyone confused and looking for resources.
Arnup said that care for dying individuals has historically moved from situations where family and community cared for loved ones at home, to hospitalization with little attention to emotional, psychological, spiritual needs and family support.
“Without minimizing the tremendous gains of medical and scientific developments, it is important to remember that the transition from home to hospital often meant the patient dying alone in a foreign environment, away from friends and family. If one were unlucky enough to be poor, it meant dying in a ward, alone among noise and strangers,” said Anrup. “Thus death, once a social and community event, became a largely individual and family event.” Increasingly, family meant the nuclear family, with the decline of the extended family as the majority of the population shifted to urban areas and family members dispersed across the country, she added.
Modern hospices trace their origins to Dame Cicely Saunders, a pioneering physician and founder of St. Christopher’s House in London, England in 1967. Saunders felt patients should expect the same attention to terminal suffering as they receive for diagnosis and treatment.
In her book Living with Dying: The Management of Terminal Disease, Dame Saunders explained the philosophy behind her work: “A patient, wherever he may be, should expect the same analytical attention to terminal suffering as he received for the original diagnosis and treatment of his condition. The aim is no longer a cure, but the chance of living to his fullest potential in physical ease and activity with the assurance of personal relationships until he dies.”
Dr. Joannie McNeeley, president of the Wheatland and Area Hospice Society (WAHS) wants to change the discussion for residents of Wheatland County.
“It will take a long time to change behaviours and values, to have people buy into the idea of moving death out of the hospitals and into our communities,” said McNeeley.
She attended Wheatland County council on Mar. 6, to give council an awareness of a movement in the county to establish a four-bed palliative care unit, which would provide a facility to help local residents and their families, allowing a dignified atmosphere for end stage care.
“Our goals are basically to provide services and programs for people who are dying, as well as support for family members, and to provide hospice and palliative beds in the Wheatland area,” said McNeeley.
However, she said this care doesn’t need to be confined to a facility. It can take place in hospitals, homes, age care facilities and in the hospice. An important component is also providing emotional, psychological and spiritual services.
“Actually, the definition of palliative care is changing to hospice care that takes care of the patient but also the needs of the family, friends and community,” said McNeeley.
She said patients do better, are more comfortable and have more dignity in hospice environments. It is also cheaper than hospital housing.
The Canada Health Act does not include home care as an essential service. It is left to regional and local level governments to fund additional hospice facilities. Alberta Health Services (AHS) will build no new beds in this region. The current ones are designated to service the Calgary area, with the main facility in Okotoks with 121 beds.
However, AHS recognizes this does not meet the need of rural patients. It is working with WAHS to brainstorm how the community can build a four-bed facility and cover operating funds in the future.
The building costs are between $3 million and $6 million. AHS will provide half the annual $1 million operating costs.
Roundtable discussions have taken place in many area hamlets and villages. McNeeley said there is a good volunteer base and coordination of resources needed for palliative care here. She would like to look at palliative care as a public health movement.
Wheatland County council proclaimed National Palliative Care Week May 5-12, and WAHS will be holding some fundraising events during that time. The first annual Hike for Hospice will be held at Kinsmen Lake on May 6; and a Cheadle Lions fundraiser will be held at the Strathmore Civic Centre on May 13.
To become comfortable with the issues in preparation for hospice situations, consider attending the Mindful Finale: Spirituality and Ritual at End of Life workshop, to be held at Hope Community Covenant Church on June 6. For registration go to ahpca.ca or call Theresa at 403-473-7845.