Questions about end of life are as old as humanity, yet they can be new and overwhelming when someone we care about is dying.
The palliative care professionals at Canadian Virtual Hospice (www.virtualhospice.ca) provide answers to these age-old questions using modern information technology. Today the unique web-based service announced an important milestone that shows just how effective its approach can be.
This fall, the website answered the one-thousandth question through its Ask a Professional feature, which invites patients, families and health care providers to submit personal queries about terminal illness. Each question is handled by an inter-disciplinary team of palliative care experts, who provide detailed, personalized, confidential responses addressing the medical and emotional concerns that arise during terminal illness.
In return, the team has received hundreds of grateful comments from people across Canada, who use words like “godsend,” “amazing,” and “torch of hope” to describe the value of the service.
Dr. Harvey Max Chochinov, Chair of Canadian Virtual Hospice, said the intimacy and accessibility of the Internet provides unique opportunities to bridge gaps of time, geography and personal isolation.
“So often, the most anxious questions arise in the lonely hours when doctors’ offices are closed, or they may seem too personal to share with even the most trusted care giver,” said Dr. Chochinov. “Our service is highly personal and individualized, and yet completely private – a safe place to ask any question and seek help with any troubling feeling. And it provides ready access to the type of specialized expertise about palliative care that may not be available in every community.”
With identifying information removed to protect confidentiality, some of the responses are also posted on a section called Asked and Answered. This collection of 80 frequently asked questions covers matters of the body and spirit during life-limiting illness, from managing pain and weight loss to talking with children about death.
The Ask a Professional team includes doctors, nurses, a social worker and a spiritual care adviser, all highly experienced in end-of-life care. The service is fully bilingual.
Dr. Mike Harlos, the lead physician consultant for Virtual Hospice, says one of the goals is to raise the bar for what palliative care can achieve.
“It isn’t about dying – it’s really about living, just as much as any other type of medical care would be. The right information can make a huge difference in making difficult decisions about care, navigating through the health care system and improving quality of life for the patient and those around them.”
The website is designed for anyone dealing with end-of-life issues, including patients, their families and friends, healthcare providers and counsellors. Last year, the website was visited about 30,000 times a month.
Most questions submitted to the site, including the one-thousandth question, have dealt with some form of cancer. Almost half of the questions have come from health care providers, and half from patients and those around them. The highest proportion of questions originated in Ontario, followed by Manitoba (where Virtual Hospice is based) and British Columbia.
The website offers several other features in addition to Ask a Professional. The most widely used is the Topics section, a collection of reliable articles on a spectrum of concerns, including symptom management, tips for visiting and care-giving. The articles are a convenient resource that health care providers can print off for their patients and families.
Other useful features of the website include The Glossary, a list of plain-language definitions for common palliative care terms; The Exchange, where Canadian researchers, clinicians and other leaders in palliative care can share the latest research, best practices and innovations in peer-reviewed articles; and For Professionals, a collection of key resources and new tools for people working, volunteering and conducting research in palliative care.