Making decisions during illness can be stressful, overwhelming and dehumanizing, but it doesn't have to be.
Eirene aims not only to challenge the way we see and understand death, but to unpack difficult conversations around end-of-life planning and navigate the complexities of death care.
One such difficult conversation, and where there is a great deal of misunderstanding, is hospice vs palliative care. As such, our aim here is to (a) de-stigmatize both terms (there’s a misconception that palliative means ‘dying,’ which isn’t the entire truth) and (b) outline how both can support the overall patient care plan.
Given the uncertainty that often accompanies these types of difficult decisions, there’s both a practical and human approach that’s required. Because ‘difficult’ takes up space and it can often feel like we’re stuck in between healing the illness and the end, we invite a countering to that, to move past ‘cured and dying,’ and instead from one good outcome to another—This is what hospice and palliative care allow us to do.
There are a number of studies that prove people who receive both hospice and palliative care have a better quality of life than those who don’t. “With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival,” wrote the authors of a study in theNew England Journal of Medicine. This often results in less depression and anxiety, less stress and more comfort. This type of care doesn’t shorten life, in some cases it extends it, and in all cases, it supports life.
As humans we like certainty and in medicine we like certainty even more. When you or a loved one is living with uncertainty, hospice and palliative care can support living through the ‘in between’. When living through this uncertainty, it’s most important to begin with the person, rather than minimizing the person to their disease. One way we can do this when considering types of care, is to understand the difference between hospice and palliative care, what type of care is best and in what stage of illness we seek them. “The idea isn’t dying, rather it’s living well until you do.”
When seeking advice from people who have lived through making these decisions, a few recurring ideas come up around the topic of hospice vs palliative care:
Both hospice and palliative care support an alleviation of suffering, particularly for an advanced illness--one that has caused physical, emotional, spiritual and existential distress--by an interdisciplinary team. They’re a dynamic duo, but they mean different things.
Hospice care is a type of palliative care, designed explicitly for the last stages of life, typically the last six months, and palliative care uses the same interdisciplinary team, with the same attention to suffering, and is administered at any age or stage of disease. The main goal is to provide a quality of life that is the best it can be and to provide as many good days as possible in the midst of suffering and uncertainty. This plan is built out and designed through goals of care conversations.
According to the definition shared in A Beginner's Guide to the End Practical Advice for Living Life and Facing Death, “Hospice care attends to a patient’s emotional and spiritual needs at the end of life and prioritizes comfort and quality of life by reducing pain and suffering.”
Here are the qualifications required for hospice care:
The best way to find hospice resources near you in Canada is to speak to your doctor or call your provincial healthcare information line. You can also use this online directory to locate hospice care resources in each province.
Whether you’re arranging for yourself or someone else, your peace of mind is our priority.
Here is a breakdown of how hospice care works and what support is available from various professionals and caregivers:
*Note to caregivers: despite the large cast of characters available to you while in hospice, the majority of your day is spent without them. It’s important to find other ways to cope and ensure you have the support you need (in Ontario you also have access to a caregiver support line).
Palliate means to ease. According to the definition shared in A Beginner's Guide to the End, this type of care “optimizes the quality of life by anticipating, preventing and treating suffering.” Palliative care, throughout the continuum of illness, involves addressing “physical, intellectual, emotional, social and spiritual needs to facilitate autonomy, access to information and choice.”
Qualifying for palliative care:
Eirene’s team is available 24/7 to provide guidance and answer your questions.
Here is a list of where palliative care services are provided:
In Ontario, “there is no cost to patients for medically necessary palliative care services in their homes, hospices, or hospitals.” Residents living in long-term care homes “may pay a co-payment,” which are “funds [that] represent the individual's contribution to food and accommodation—not palliative care services.”
In Saskatchewan, your doctor or a member of your health care team may refer you to a hospice palliative care program in the province. Registered palliative care patients receive prescription drugs free, if listed in the Saskatchewan Formulary or approved under Exception Drug Status. Learn more here. This guide called The Saskatchewan Patient Guide to Supportive Care - PDF (2019) is a helpful resource that was developed to provide details about palliative care in Saskatchewan.
In Nova Scotia, your doctor or healthcare provider can refer you to the province's palliative care resources. Click here for info. The fees for palliative home care are based on your income so you may not be required to pay a fee for service. Nursing services are free. Call 1-800-225-7225 and a care coordinator will set up an in home visit to complete a care assessment. If you already have a care coordinator, speak with them about this service. Learn more here.
We’re committed to honest pricing. We don’t charge extra for mileage, device removals or crematorium fees.
This type of care doesn’t cure the disease, but it will help you live well with the disease.
While hospice care provides this support at the end of life and palliative care supports living well at any stage or age, both types of care focus on “expert symptom management, skilled communication and support for patients and their families.” The aim is to help patients find “enjoyment and pleasure in the things that matter most” and navigate the often complex, sometimes heartbreaking, and even beautiful, complexities of death care.
It’s definitely challenging to know how to make the right decisions and we don’t want to minimize this part of the process. It’s our hope that with approachable, compassionate and informative content we can help make a tough situation a little bit easier.