Being diagnosed with a life-limiting condition is a challenging and emotional time for patients and their caregivers. A life-limiting diagnosis means patients will need to access many medical, community, and even spiritual supports to prepare them for their palliative care journey ahead, and ensure they are well cared for and comfortable as their condition changes and advances. Rossland GP Dr Lilli Kerby explains, “When patients and families are faced with the prospect of a life limiting illness, this news can be devastating. Having easy access to information allows health care providers to support families in all stages of their journey, and for patients and families to know that they are not alone.”
With that in mind, Dr Kerby and a team of doctors from the Kootenay Boundary Division of Family Practice
created a palliative care information guide titled “When You Are Facing a Life-Limiting Diagnosis
.” The guide brings community supports and resources together into a comprehensive guide that GPs in the communities of Nelson and Trail can use to support patients and their families. “We have resources for patients in the community,” says Dr Kerby, “but families and health care professionals may not know what is available, so this guide was created to support everyone who may be involved in supporting patients with a life limiting illness.”
Answering questions from patients and caregivers
The guide explains that the word ‘palliative’ is not only used to refer to dying, but to the care provided over the course of months or even years prior to the end of life. Patients and their families can take comfort in knowing that there are many supportive services available to help improve patients’ function and quality of life throughout this time. The guide provides answers to questions patients and their caregivers may have, including:
- What can I do right now?
- What about putting my house in order?
- Who do I call when I need help?
Patients are also provided with a comprehensive list of topics they should discuss with their primary care provider, so that no detail in their care is overlooked. Suggested topics include:
- If my symptoms get worse, how will they be managed and who will manage them?
- What can you tell me about how my illness might change in the near and more distant future?
- Although you can’t give me an exact timeline, could you tell me how much time I might have left in years or months so I can plan ahead?
- If I am too unwell to come and see you in your office, do you make house calls?
Planning and preparedness
“One key goal of this information,” clarifies Dr Kerby, “is to allow patients and families to be aware of the services available to them early on, so they can be prepared. This way, when families are struggling, they know that there are supports, and can access the services at the time that they feel is right for them.” With preparedness in mind, patients are encouraged to develop an Advance Care Plan (the pamphlet provides a link and contact numbers for assistance), and to seek out a family member or other support person who they can bring along to each medical appointment, to be a part of important care conversations and take notes if necessary.
Perhaps most pertinently, the pamphlet provides information and contact numbers for a wide array of resources available to palliative care patients, including BC Palliative Benefits (home care nurses, palliative medication, and medical supplies) and Federal Compassionate Benefits (Employment Insurance benefits paid to people who have to be away from work to provide care or support to a family member who has a significant risk of death within six months). Each version of the guide (one for Nelson and one for Trail) also contains a comprehensive list of local numbers that patients can call when they need help—from practical support like personal care and medication delivery, to emotional support (peer support or someone to talk to about spiritual matters).
The Dementia Roadmap and the Life-Limiting Diagnosis guide are shareable resources that can be repurposed by physicians and communities with permission from the Kootenay Boundary division. Click here
to learn more.