Ask an Expert: Kathleen Yue Discusses Palliative Care for Parkinson’s
Kathleen Yue, RN, BSN, MN, CHPCN (C), is the Clinical Lead, Education at the BC CPC. She works to educate healthcare professionals on how to best support their clients and families by adopting a palliative approach to their specific field of care.
Palliative care is intended to provide medical services, emotional support, and spiritual resources for people with incurable and degenerative diseases, and those who are close to death (HealthLink BC, 2017). A palliative approach to care focuses on comfort and quality of life instead of, or alongside, intensive and invasive treatments aimed at curing chronic diseases. It involves the entire healthcare team, as well as social workers, volunteers, and others who support the person receiving care with non-medical tasks, such as emotional support and guidance, running errands, and advance care planning.
The BC Centre for Palliative Care (CPC) works with the Ministry of Health in BC, as well as national committees, healthcare organizations and non-profits, to promote best practices in palliative care.
What is the palliative approach?
You may be familiar with palliative units in acute care hospitals, or hospice care with a home-like environment; but palliative care is really a philosophy, rather than a place. The philosophy of palliative or hospice care focuses on quality of life, comfort, and living well. It is person and family-centred, so your values, beliefs, and priorities are an important part of your care.
Palliative care used to be a specialty offered only near the end of life, particularly for those with terminal cancer. Today, we focus on a palliative approach for any type of care. The focus is on trying to help anyone who has a life-limiting illness, from the time of diagnosis. Parkinson’s is life-limiting in that it is incurable, progressive, and affects all aspects of your life.
Often, people will say, “I don’t want to talk about palliative care. I don’t want to go there right now.” When things get worse, it can be a much more difficult conversation. The best time to talk about things that could happen in the future is before a crisis occurs when you are still calm.
There are many issues that can arise with advancing Parkinson’s. A palliative approach is holistic, supportive, team-based, and focused on your priorities – the main message is that you are not alone. Advancing symptoms can be scary, but there are many people around to help you.
Why choose palliative care?
When I worked in the hospital, there was a clear distinction between curative and palliative care. I noticed that when the focus changed to palliative care, the whole atmosphere around the patient, family, and healthcare team completely changed. The anxiety levels went down, in general, and I really felt a marked difference in the approach to care.
In light of growing support for Medical Assistance in Dying, there has also been a renewed focus on palliative care, helping people to live comfortably and have a high quality of life, regardless of their diagnosis. All care should really be that way.
What kinds of services are provided?
Most healthcare involves a team, but this is especially true in palliative care. The healthcare team members involved in palliative care include physicians, pharmacists, physiotherapists, occupational therapists, dieticians, home support workers, case managers, counsellors, spiritual health practitioners, social workers, and more. Each person on the team brings a toolbox of knowledge and resources.
Your healthcare team can help you with advance care planning, assessments of your health, safety, and wellbeing, equipment to assist you with daily living, symptom management tools and strategies, and social and spiritual support.
Palliative care services:
- medical services with a holistic approach (i.e., involving the entire healthcare team, or accommodating alternative treatments)
- emotional support resources (counselling, spiritual support, etc.)
- advance care planning (with doctors, case managers, family, etc.)
- hospice care, residential/long-term care facilities, palliative care units in hospital
- safety support services (i.e., home safety assessments by home & community care workers/volunteers)
- support for carepartners and family (all services above, in collaboration with carepartners/family, or with consideration to their needs, as well as respite care)
What is the role of advance care planning in the palliative care approach?
Upon diagnosis, many recognize that their time is, or may be, limited by their illness. Some people have told me that when they have a life-limiting diagnosis, part of it can be a gift, because all of the unimportant things in life fall away, and you can really begin to think about what matters most to you, and how you want to spend your time.
Every choice we make in life is a balancing act. This does not apply only to major choices, like those about CPR or Do Not Resuscitate orders, but involves thinking about everything, like where you want to live, who will care for you, and how you will communicate if you are unable to do so verbally.
In advance care planning, legal documents are helpful only because they are part of a conversation. You cannot predict what things are going to be like for you, or what you might want to do in certain situations. Talking about end-of-life decisions with those who are close to you is the most important part of advance care planning. Share with your family and health care team your values, beliefs and priorities.
People with Parkinson’s do need some help with their daily living, and if people are wanting to stay home until the very end, it is a family commitment, and sometimes a financial one. Some people love the idea of being able to give that gift to their loved ones, so the benefit of caring for their family outweighs the cost that might be taking time from work, for example.
Many people do prefer to stay at home until their death, but most die in residential care or acute care. Usually, when people end up dying in acute care, it is because there has not been planning ahead of time. Planning with your physician is important to avoid dying in acute care. Many physicians say they would love for their patients to make separate appointments to talk about advance care planning, so the discussion is more focused. So, go ahead and make that appointment, and let your doctor know what is important to you, because they will likely be consulted in the future.
How can I ensure my healthcare team is making the right decisions for me?
We recommend that you keep a diary for all of your symptoms. What can help your healthcare team make informed decisions is to have a really good assessment, and a full picture of your symptoms.
The BC CPC Symptom Management Guidelines include a mnemonic – OPQRSTUV – that you can use in your diary to help you track your symptoms:
Onset: When did you first notice this symptom?
Provoking and Palliating: What makes this symptom worse and better?
Quality: How does the symptom feel? (e.g., different types of pain, like aching or tingling, can have different causes and treatments)
Radiation: Has the symptom travelled or spread anywhere else?
Severity: How severe is the symptom? Rank it on a scale of 1-10.
Treatment: What helps you manage the symptom, or makes it go away?
Understanding: What is your understanding of the symptom and its implications?
Values: How does this symptom impact your life? How would you like to treat it?
How can I support myself and my loved ones?
Self-management is a significant part of palliative care. To support yourself and your carepartners, consider alternative strategies for treating your own pain and fatigue that do not involve a trip to your physician.
In palliative care, we talk a lot about total pain; that is referring to areas of life that could be increasing your pain. For example, if someone has pain from a fractured leg, and they are feeling guilty that they caused an accident that put them in that position, they will have more pain because of that guilt. What this is really saying is that pain is not only physical. That is why it is important to pay attention to what else is going on in your life, and to share all of that with your healthcare team. There are a lot of different things you can do for total pain – medication is not the only option for treating pain.
For fatigue, one metaphor I have found extremely helpful is the energy bank. This will help you consider what depletes your energy, and what increases it. So, with each activity you are considering, you can think about what it will cost you from your energy bank, or how much it will deposit into it. Research has found that, sometimes, too much rest can actually make your fatigue worse. Instead, you can think about energy restoration activities. Some people find meditation, listening to music, or crafts, can increase your energy more than rest.
You should also plan for assistance, and adapt your expectations. Say that bathing and dressing takes up all of your energy for the day, but your grandchildren are coming by in the afternoon. Maybe you do not want to deplete your whole energy bank by the time they arrive, so you call in a home care worker to help you have a bath, so you have more energy for your grandchildren. Again, these decisions are all about what is most important to you.
Additional Resources
Advance care planning is integral to a person-centred palliative approach. The BC CPC website offers information and resources on advance care planning to support individuals with life-altering conditions in making important decisions about their end-of-life care.
BC Centre for Palliative Care | www.bc-cpc.ca/cpc/acp
Contact your local health authority for more information on palliative care, home and community care services, and advance care planning:
Fraser Health | www.fraserhealth.ca
Interior Health | www.interiorhealth.ca
Northern Health | www.northernhealth.ca
Vancouver Coastal Health | www.vch.ca
Vancouver Island Health | www.islandhealth.ca
Sources
HealthLink BC. Hospice Palliative Care. Retrieved from: www.healthlinkbc.ca/health-topics/aa114690
This content was published in the Spring 2019 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.