By: Ellie Foster, MPH
Program Manager, MaineHealth Learning Resource Center
When it comes to treating cancer, there are often many different options to help you get better or stay better for as long as possible. But some of those options don't always leave you feeling better. In fact, sometimes they can make you feel worse. Along with the physical discomforts of cancer treatment come many other challenges like emotional distress, social concerns and questions regarding spirituality. Enter palliative care.
Dr. Lauren Michalakes, Palliative Care Specialist at Pen Bay hospital explains it like this: "Palliative care is actually a model of care that approaches life-limiting illness through an interdisciplinary lens, not just the physician’s. So there are palliative nurses, palliative care doctors, social workers, chaplains and therapists. We all work together, inter-mingling our expertise in a way that best serves the needs of a particular patient and family. "
Palliative care providers are challenged to look at diseases they know so well through a different lens: the one that focuses on the impact of that disease, and its effect on the individual’s quality of life.
Why think about palliative care during cancer treatment?
A new diagnosis of cancer can be one of the most confusing and emotionally challenging experiences of anyone’s life. The jargon is confusing, the treatments are confusing and there are often multiple sources of physical discomfort, such as pain, fatigue and nausea.
Dr. Michalakes emphasizes that "early palliative care involvement tries to assist patients in setting goals as they navigate through a new a new and unknown territory. Early on it might be finding the right combination of medications to manage pain. Later on it might be discussing various treatment options and helping patients decide on ones that best meet their goals."
Palliative care helps patients achieve the best possible quality of life throughout the course of a serious illness.
So why isn't everyone getting palliative care?
Palliative care is a relatively new medical specialty. Many patients don’t know to ask about it. And many doctors, depending on where and when they trained, may not have experience with palliative care.
Another issue is lack of access. There might not be a local palliative care expert in the particular cancer setting where a patient is receiving his/her cancer care. Many people tend to confuse palliative care with hospice care, which focuses mostly on end of life.
Palliative care can begin as early as your first diagnosis and continue through to end-of-life care and bereavement. Dr. Michalakes encourages patients to start thinking about palliative care early on.
"Having a palliative care physician involved means you have another set of eyes, ears, hands and heart involved, as a patient walks his unique and individual journey. It’s about looking at care through a different lens, one that focuses on quality of life, not just quantity."
What happens during a conversation about palliative care?
The goal of a palliative care conversation is to guide patients and help them make the best possible decisions about their care. Cancer care can be overwhelming in the types of treatments offered, the types of side effects and complications experienced, and impact it has on a patient’s entire sense of well-being.
Dr. Michalakes presents this conversation as an opportunity to think about challenging topics. "The palliative care conversation helps a patient explore difficult topics like prognosis, treatment options available, and ones feelings about life-prolonging interventions, like CPR and life-support machines.
The conversation involves the exchange of important information about diseases, trajectories, prognosis, and what to expect as a disease runs its expected course. But more importantly, the conversation helps patients think about aligning realistic expectations, within the limits of serious illness, with what matters most. Some patients may choose to fight hard, accepting as much treatment as is offered. “Others may choose to forgo aggressive treatments that have low chance of response, in favor of time spent at home, without the burden of uncomfortable side effects."
It's really about getting at what means most to you, the patient.
What are the benefits of palliative care?
Palliative care seeks to provide relief from pain and symptoms like nausea or fatigue. But this isn't all. Studies are starting to show that patients with advanced cancer who receive palliative care along with traditional cancer care actually enjoy better quality of life, accept less ineffective care, and spend less time in emergency rooms and Intensive Care Units. They are more likely to die in the comfort of their home. They more commonly receive the support of hospice care.
And, here’s the interesting thing. They actually live longer.
So if you or someone you love is suffering from pain, emotional distress of other cancer related side effects, don’t be afraid to ask your care team about adding palliative care in to the treatment plan.
As Dr. Michalakes looks at it, "palliative care lets patients live better and live longer.”
Learn more about palliative care at MaineHealth here.