Palliative care is not just about death and dying. It’s all about the life that comes before.
Justine Gauthier, Nurse Clinician
Susan Cameron Cook Neuro-Palliative Care and Pain Program, The Neuro
In the face of death and dying, palliative care can be a sensitive and tough topic for patients, families, and even amongst healthcare professionals.
Specialized neuro-palliative care supports gravely ill patients through the entire continuum of their disease, easing their and their loved one’s stress and suffering through skilled consultation and comprehensive care.
We interviewed Justine Gauthier, palliative nurse clinician at The Neuro, to find out more about neuro-palliative care and the biggest lessons she is learning from her patients who are facing their mortality.
Justine holds the respect, dignity, and comfort of patients as the highest priority.
As soon as she receives referrals, she is acutely involved in a patient’s care- from seeing them daily to ensuring that they are in a suitable and comfortable setting.
She is present through all stages of sadness and uncertainty, providing compassion and support to patients, families, and even to other healthcare workers.
Q: What is neuro-palliative care and why is it so important?
A: Palliative care is typically associated with cancer care but, neuro-palliative care is a separate entity. It focuses on the relief of suffering, as well as providing care that revolves around each patient’s unique goals and needs.
Palliative care has historically been associated with a short prognosis. However, in neurological illnesses, we don't think that necessarily applies. We like to be present early, to provide care and be able to maximize someone's quality of life for as long as possible.
We need to ensure that patients are treated with dignity throughout their journey from diagnosis of a terminal illness to end of life.
People at the end of life still have the right to active and comprehensive care; the goals may be different, but specialized care can transform this experience for patients and families and aid with bereavement, supporting families and friends even after their loved one has gone.
Q: What is the biggest misconception around palliative care?
A: The biggest misconception is that palliative care is only about dying, that it's only about the end of life.
That's not what it is at all, especially not in neurology and neurosurgery.
If we're involved early, we can do so much more for patients and I think we owe it to them.
There are studies that show that offering palliative care, along with curative-intent treatments, brings better outcomes and longer survival. Palliative care is not just about death and dying. It's all about the life that comes before.
*NOTE: this footage was filmed prior to the pandemic
Q: What are some lessons that you have been learning from your patients through this job?
A: It's the little things in life that matter the most - having meaningful relationships, being with your family and your friends, enjoying a good meal, hugging your pets.
Often patients will want to be reunited with their families, their pets, and to be at home if it’s possible. It shows that when you are really sick, those are the things that matter the most.
I owe it to them for giving me this perspective on life.
Q: What does a typical day look like?
A: It's quite unpredictable.
The way it works is that we go to the patient, whoever needs us, wherever they are in the hospital or in the outpatient clinics.
I am lucky to be able to work with colleagues across the hospital: physiotherapy, occupational therapy, social work, the ICU team, neurosurgery, spiritual care, etc.
I have some patients that I follow for a while, so that is where I have stability but otherwise, I never really know what consult is going to come our way or who I'm going to meet that day.
Q: Who do you work with, and what services do you provide?
A: Our team consists of a physician-nurse clinician dyad. I work with Dr Jeff Hall on a daily basis and we see our patients together. Being part of a team is essential when you face life-and-death issues this regularly.
We work with whoever needs us. Anyone who needs our care.
The services we provide here are for all patients. And patients can either self refer or ask for a referral from their physician.
We assist the care teams when there are some issues that they're not comfortable with, such as refractory symptoms, high levels of distress, complex needs, etc. So, we make sure to be available to help them.
Also, we provide phone and email support to patients who are at home. We remain available to provide support to bereaved families and can refer them to appropriate resources if needed.
Q: What has been the biggest motivation for you to come to work?
A: What motivates me to come to work every day is the patients.
Sometimes the challenges that they are facing are very difficult to witness and to be a part of.
Knowing that I can help in some way is really what gets me out of bed every morning.
I want to be there for them and be able to hear their stories and I'm really grateful that patients share their stories with us.
Also, the learning possibilities are practically endless in this field because neuro-palliative care is very new. I don't think there's a day that goes by that I don't learn something.
Q: What is something unexpected that you appreciate about your work?
A: There is a certain slowness about it that I like. Don't get me wrong, this is a very fast-paced environment and a high acuity hospital.
However, when you sit down with a patient and a family to talk about very serious things, time feels like it stops a little bit - we're in a bubble and it's protected, and I can give them my full attention.
And we care about real, down-to-earth things that matter in the moment. That's definitely where I find most meaning and why I love what I do.
Q: How can a caregiver or family member support the process of palliative care?
A: Caregiver burnout is something quite common in neurological illness because patients will need a lot of care over a long period of time.
Caregivers are quite at risk of becoming ill themselves. We're very aware of this, and so we support families as well. One key thing to do as a family member is to make sure that you take care of yourself to be able to care for your loved one.
In terms of being involved in the day-to-day care, I think what’s important is accompanying the patient to their appointments, helping them express their wishes, if they're unable to do so, while having their perspective in mind.
Family at the bedside has a tremendously reassuring effect on patients. It's quite striking to see the way that patients who seem to not be necessarily fully conscious, for example, or sleeping a lot, really perk up when they hear the voices of their loved ones, and you can see that they recognize them.
Family presence is so important. The early days of the pandemic highlighted this and we, as healthcare professionals, felt quite alone without the families physically present and supporting their loved ones.
Q: How are the palliative care needs of neurological patients different from other forms of palliative care?
A: Neurological patients can have cognitive changes, communication impairment, or behavioral changes as well, which can be difficult for families to cope with, or can be uncomfortable for some people who may require guidance to navigate through this challenging time.
We are very aware of this and we always put the emphasis on the fact that the person is still there, regardless of their evolving condition. To really be able to provide the care they need requires being prepared to take time with them, as well as specialized training and experience to be able to help them.
Q: What’s new in the program?
A: We have a new suite for neuro-palliative care patients and their families to help meet their needs.
Ronny’s Room, as it is named, ensures that people in the final stages of life can have their loved ones close by and still have access to quality care in an environment which feels less like a hospital and more like a home. There is a space for family members so that they can stay as long as they want.
The suite was created as a soothing environment where it is possible to say goodbye in an intimate context. It is composed of a bedroom, bathroom and a small living room for family members to eat together, take a rest, or do office or schoolwork while their loved one sleeps.
We wereÌývery lucky to have a donation from Dr. Sheila Linden, a strong advocate for palliative care.
My vision was to provide a home-like environment where we honour and respect a patient’s will, their values, preferences, and priorities:Ìýfind out what they want, invite whom they want, have their own food, have their personal needs met in peaceful and soothing surroundings.
I want dignity for patients during the final stages of life.
Dr. Sheila Linden
I don't think we realize what it is to stay in the hospital or have someone who's sick for a long time in a hospital. We come here every day, and this is like our second home.
But it's terrifying for patients and families, regardless of the severity of what they're going through. This is often the worst time of their lives. Having a space designed around their needs is transformational for patients and families.
Q: What would be your advice to patients?
A: Don't be afraid to ask questions. There are no silly questions when it comes to our health.
Patients should feel like they can share what their concerns are, what their experience has been, what their worries are about their roles in their family. How this is affecting their family dynamics? How is this affecting their spiritual beliefs? How are they coping psychologically?
There is nothing unimportant about this and I urge them to speak up and share their concerns with us because if we can't help, we'll find someone who can.
