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 around hospice and 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 talking with a few people (myself included) who have lived through making these decisions, a few recurring ideas come up:
- Don’t wait too long to move towards either type of care
- Face the reality of the situation, even though it seems difficult to digest, and know that hospice and palliative care provide a comforting and secure place to help navigate what you’re experiencing (uncertainties of illness, timelines, pain management, caregiver support etc.)
- Hospice and palliative care look at the whole person first and then at the disease
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.
Where are palliative care services provided?
- At home (might need to consider an at-home death plan)
- Long-term care facilities
- Hospices (a home for people living with a terminal illness)
“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,” according to the definition shared in A Beginner's Guide to the End Practical Advice for Living Life and Facing Death.
Qualifying for hospice care:
- Living with a terminal illness
- Physician’s certification (this sounds fancy and it simply means you need to talk to your doctor about completing the necessary documentation)
- In Ontario to be admitted, the patient needs to qualify for Ontario Health Insurance Program (OHIP) and have a referral from their Local Health Integration Network (LHIN)
- Some hospices also require medication lists, detailed medical documents or doctor-to-doctor referrals
A few important things to note:
- You can always revoke hospice if it doesn't feel right
- Be prepared to forgo further curative attempts
- Some people will remain in hospice longer than six months
- Some people's health will improve and they will leave hospice, others will not
- There is nothing magical about the six month timeline, it’s simply an estimation
- A doctor who oversees care and prescribes medication for pain and other symptoms
- A nurse who visits
- An aide who comes several days a week for personal care (bathing, grooming) and basic tasks
- A social worker or other counsellor to support emotional and logistical considerations
- A chaplain, trained in interfaith ministry, to provide spiritual support
- Round the clock nursing care in the home for a day or two if discomfort is overwhelming
- A volunteer, if you need one, to assist with grocery shopping, gardening or keeping vigil at the bedside, so the caregiver can step out
- A physical or occupational therapist, dietician and speech-language pathologist
- A grief counselor
- Basic supplies and medical equipment
- 24/7 telephone support
- Respite stays
- Prescription support
*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:
- Discussion with your medical team
- A decision to focus on comfort rather than cure
- Quality of life is impacted by illness
- Diagnosed with a serious or chronic illness
- Require ongoing pain management or care
- Caregiver requires support
- Discussions with the patient and family about the goals of care
- Manage pain and other symptoms
- Making sure you have and understand your medications
- Communication about the medical condition and what to expect as it progresses
- Emotional support for patient and caregivers
- Spiritual support
- Bereavement support for families
- Help coordinating care delivered by all your providers as you move from one setting to another (from hospital to a nursing home, for example) and communication with regards to symptoms and evolving goals of care
- Referrals to communities of resources for assistance with social and practical needs (medical supplies, meal delivery, support groups etc.)
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.”
Living with uncertainty and moving to the next good outcome
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.
We’re here to support you. Visit www.eirene.ca to learn more about our offerings.