Palliative home care is a difficult topic to discuss. This blog highlights how to approach an end of life discussion and be best prepared. For privacy protection purposes, some characters and voices in this article are composites, and are not actual customers or clients of Classic LifeCare.
Norman and Melanie’s Life Together
They had met thirty years ago as undergrads at the University of British Columbia. Now their journey together was nearly over.
Norman studied to become a software engineer and got a job after graduation at a big tech company in San Jose. They got married and Melanie continued her studies to become a clinical counsellor. Norman’s career as a software engineer took off during the explosion of the Internet in the 1990’s.
“There’s a little part of Norman in almost everything we touch, each and every day,” says Melanie. “No one ever really thinks about the people who have ‘coded’ our daily life.”
But when it came time to raise a family, Norman and Melanie decided to move from the United States back to Vancouver. Norman’s skills were in demand in Vancouver, and the couple were able to purchase a home for their family not far from Spanish Banks.
Melanie started her own counselling practice, and the couple raised two daughters who would also enroll just up the road at UBC. There was skiing in the winter, and sailing trips up the Inside Passage in the summer.
Life seemed perfect. Until Norman got sick.
“Norman ended up spending about six months in hospital getting treatment for cancer,” says Melanie. “It was heartbreaking but we knew he would get better and come home.”
Norman did recover, and for a time it seemed like his cancer was in remission.
“The cancer, unfortunately, came back,” says Melanie. “The cancer was aggressive and in the end required Norman to make daily trips to draw blood and get blood transfusions. He was also in considerable neurological pain. The experience became unbearable.”
Melanie and Norman came to the decision to end treatment and put Norman in palliative care.
Norman would die at home, in peace, surrounded by his family.
Palliative Home Care
“In palliative home care a person is given access to the palliative care program in their health region when their illness is deemed terminal,” says Andrea Warren, Executive Leader of Vancouver-based Classic LifeCare.
“Palliative home care is a program comprised of case managers, doctors, nurses, social workers and therapists. They have wonderful resources and support for the person suffering and their family. Your family doctor will help you access these programs when the time is right.”
Most importantly, palliative home care happens in the loved one’s home.
“Palliative home care can mean ending on your terms—it can give an individual a sense of control in a very uncontrollable situation,” says Warren.
How Long Can I Keep A Loved One at Home?
While Warren now leads Classic LifeCare’s day-to-day operations throughout British Columbia and Alberta, she has also worked as a private home care nurse for over 17 years.
“I have witnessed many families and caregivers coming together during the final days of a loved one’s life in their own home,” Warren says. ” I have often had the honor of being part of the team that provides palliative care to an individual until the end.”
Changes in attitudes and approaches to end-of-life care means there has been a shift in palliative care over the past few years—people now go home more often to experience their final days.
“I’m often asked by families how long they can keep their loved one at home,” says Warren. “The answer I most often give has been ‘until the end’.”
Palliative home care can often be a very positive experience for the palliative person and their family.
“By dying at home, a person is surrounded by their family in the comforts of their own home with the assistance of trained palliative care professionals,” says Warren. “Palliative home care can mean ending on your terms. It can give an individual a sense of control in a very uncontrollable situation.”
Melanie, looking back at her and her family’s final days with Norman, agrees.
“How can palliative home care give you a sense of control? Home is what is familiar to you,” says Melanie. “You can have your morning coffee looking out in your garden or sitting at the table you have for the last several years and eating a home cooked meal with your loved ones.”
“How can palliative home care give you a sense of control? Home is what is familiar to you.”
For many families experiencing the end of life of a loved one, palliative home care means the comfort of being surrounded by your loved ones and your belongings like familiar photos, furniture and your own bed. It allows you to sleep near your partner as you have always done.
“You are in control of setting your own agenda. You can eat when you like, sleep when you like and have a bath when you like,” says Melanie. “Most importantly though being at home allows you to be surrounded by the people that love you. These are the people that have always been there for you and will be there until the end.”
Private support and palliative home care
“A loved one is given access to the palliative home care program when their illness is deemed terminal,” says Warren. “This is a program comprised of case managers, doctors, nurses, social workers and therapists. Everything is designed to alleviate suffering and support the entire family.”
“Home care is an incredibly important part of palliative care.”
While provincial governments and health authorities are continuously enhancing palliative care programs to improve the experience at the end of life, there can be a limit to the number of hours for in-home caregivers.
“Home care is an incredibly important part of palliative care,” says Warren. “Families need all the help they can get with any number of tasks. Care case managers will often refer you to private home care.”
Private home care’s main benefit is flexibility.
“Families can rely on private home care to get help around the home. This included everything from personal care, nursing care and pain management to meal preparation and homemaking tasks,” says Warren. “A nurse from a private home care agency will help you find caregiving staff that suits your needs.”
Melanie says that she and her family benefited from home care workers.
“We didn’t want Norman to spend his last days in the hospital. However, we felt overwhelmed when considering what it would take to have him die at home,” says Melanie. “Our palliative care caseworker helped us in turn get help from a private home care provider.”
Private home care nurses work alongside the palliative care program to create a care plan. This program provides optimum support to the palliative individual and their family.
Norman is surrounded by his family at home. But his condition caused him significant neurological pain. Melanie and Norman’s home care provider could help out with pain management.
“Receiving good palliative care requires the palliative care program and private home care agency to pay attention to all the details,” says Andrea Warren. “Every situation is unique and personal.”
