Living with Uncertainty and Moving Towards the Next Good Outcome
As BJ Miller shares in his TED Talk the “healthcare system is one that too often doesn’t serve.”
It was designed with “disease in mind, not people at it’s centre.”
He then goes on to say we can deduce that the healthcare system was badly designed. Through his work Miller brings intention and creativity to the experience of palliative care and asks the question: how do we redesign (using design thinking principles) and improve patient outcomes?
This is where palliative care comes into play, it’s about comfort and living well at any stage and providing the support needed to figure out what’s the best course of action over time.
He goes on to highlight a few important design cues when considering the most effective and people-centric care:
- Taking unnecessary suffering out of the system
- Tending to dignity by way of the senses
- Focusing on well-being, ensuring that healthcare then becomes about ‘being more wonderful, rather than less horrible’
As Miller explains, this all gets at the core between a “disease-centered and human-centered model of care.” He says, “we can’t solve for death and disease, but we can design toward it” (with palliative and other people-centered types of care). He believes, “if we love such moments ferociously, then maybe we can learn to live well, not in spite of death, but because of it. Let death be what takes us, not lack of imagination.”
Here at Eirene one of the myths we want to bust around palliative care is in line with Miller’s, around the human components of healthcare and more specifically, palliative care and shine a light on integrating it into the care plan. This post will provide you with an overview of palliative care, how important it is to incorporate palliative care early on in the diagnosis, and, if you’re living in Ontario, what you need to know.
What is palliative care?
Palliative care isn’t to be seen as synonymous with care at the end of life (which is hospice care), more on that in this previous post. There’s now an deepening discussion around a more integrated approach to care, the early integration of palliative care, with the aim of improving patient outcomes. This type of care doesn’t cure the disease, but it will help you live well with the disease.
When should you consider palliative care?
As we shared in this previous post, according to the definition shared in A Beginner's Guide to the End palliative 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.” It supports living well at any stage or age and converges with “expert symptom management, skilled communication and support for patients and their families.”
What’s interesting however, is that despite The American Society of Oncology (ASCO) recommendation that “all patients with advanced cancer receive palliative care early on and along with cancer treatment,” it’s not something that is widely part of most patient’s care plans early on in their illness.
According to The Canadian Cancer Society “[i]n Ontario 40% of cancer patients do not receive a palliative assessment in their last year of life.” The sooner palliative care is integrated into the health care plan the more quickly quality of life outcomes can improve, and the more likely it is that the care received can continue to make us feel human (and not only like a patient).
Questions that support integrating palliative care
What does the person living with the illness want?
- Some consider surgery, others various treatment options
- Some prioritize comfort
- Some prioritize remaining at home
- Dr. Paul Kalanithi, who wrote When Breath Becomes Air, for example prioritized cognitive clarity over pain control, as he worked to finish his book
What options are available?
Both for care and symptom control.
What is the nature of the illness?
Palliative care provides comfort, even while a disease is being treated.
Example: In early stages pain control may be only a small part of the overall care and as the illness progresses it may become a more dominant part of the care plan.
It’s important to remember that a palliative care plan can often be an uneasy and emotional one for everyone involved. Knowing what lies ahead, what’s to be expected, what might need to be addressed, and how the disease may progress, are all important factors to manage daily care needs and achieve the best quality of life, both for the individual and the family and caregivers. It is these decisions that allow the patient to live (and die) the way they want.
Where is palliative care available?
- At home (consider an at-home death plan)
- Long-term care facilities
- Hospices (a home for people living with a terminal illness)
According to the Government of Ontario, here’s what you need to know
What types of services are provided?
- Physician and nursing services assess and manage the progression of the illness (includes providing pain and symptom management to improve comfort and quality of life)
- Personal support services (e.g., homemaking)
- Other services, such as physiotherapy, caregiver support, pharmacy, social work
How do I access palliative care?
- Primary health care provider (e.g. family doctor). Many types of palliative care are provided directly by primary health care providers who are already treating individuals for disease and when more specialized services are required, primary health care providers can provide appropriate referrals
- Local Local Health Integration Network can refer you to hospice or other support services
- Local hospital
- Long-term care home
What does it cost?
- “There is no cost to patients for medically necessary palliative care services in their homes, hospices, or hospitals.”
- “This includes any treatments that a physician may provide. While residents of long-term care homes may pay a co-payment, these funds represent the individual's contribution to food and accommodations—not palliative care services.”
What support exists for caregivers?
“There are a variety of supports available to caregivers in Ontario. These may include respite care or hospice-based bereavement.”
What is Advanced Care Planning (ACP)?
- A process that encourages patients, family members and health care providers to talk about patients' health care wishes, in case there comes a time when the patient may not be able to make his or her own healthcare decisions.”
- If there is an ACP in place at end-of-life it can eliminate difficult management questions for families and attending physicians concerning palliation and hospice and end-of-life care
- Check out the free Eirene ACP guide here.
ACPs and palliative care:
- At the onset of the diagnosis it’s helpful to sit down with family and your care team to make ACP decisions. This way, the person’s wishes can be integrated into their overall care plan and it also informs everyone involved in the care of the patient’s wishes at end-of-life
- While these conversations can of course be difficult, they support patient-centred palliative care and ensure family and friends are able to better navigate the stress and uncertainty that comes at an already emotional time
- As Miller says, “it’s in front of us, 100% of us die, it is going to happen, it IS inevitable and, somehow, someway, we figure out a way to avoid that subject, somehow we figure out a way to keep it feeling like death is optional.”
What is probably most important when considering palliative care is to remember that it provides patients with options for both pain and symptom management, along with a higher quality of life, while still pursuing curative measures, should that be in line with the overall care plan. It’s also most effective when considered early in the course of the illness.
There is no right or wrong model for the provision of palliative care. It can be variable in nature and length and each care plan is unique to the individual—The best model is always the one most fitting for the person living with the illness.
Located in Ontario?
This link offers a myriad of free resources that you can check out to manage your palliative care journey.
We’re here to support you. Visit Eirene to learn more about our offerings.