A Palliative Approach to Parkinson’s Care
As a condition with no presently-known cure, Parkinson’s disease (PD) is treated with therapies, medications, and lifestyle changes aimed at managing the severity of symptoms, and slowing their progression. People with PD benefit most from holistic care delivered by a skilled team of healthcare professionals – particularly those specializing in movement disorders and neurodegenerative conditions. Members of the Parkinson’s healthcare team can include general practitioners, neurologists, nurses, physiotherapists, occupational therapists, speech-language pathologists, clinical counsellors, social workers, and other allied healthcare professionals. These experts work together to ensure people with Parkinson’s and their carepartners have the tools, resources, strategies, and support that they need to maximize their quality of life.
Parkinson’s management does not end at clinical care, however. Living well means addressing all of the challenges you encounter on your journey with PD.
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)
Palliative Approach to Care
Palliative care is focused on providing comfort and quality of life. Often, this type of care is considered to be reserved for end-of-life or those suffering from terminal illness, and delivered in hospice. However, the attitudes of healthcare professionals around the world are changing on the matter.
“Palliative care is really a philosophy, rather than a place,” says Kathleen Yue, Clinical Lead, Education at the BC Centre for Palliative Care (BCCPC).
“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” (PSBC, 2019).
Palliative care addresses any issues that may reduce one’s quality of life. According to the World Health Organization (WHO), this can include any challenges one may face, “whether physical, psychosocial, or spiritual” (2020). By taking into consideration your body, mind, spirit, relationships, and any other important factors in your life, your healthcare team can adopt a palliative approach to provide you with holistic Parkinson’s care.
A Parkinson’s care plan should take into consideration all aspects of a patient’s life. For example, one’s income may be a barrier to accessing specialized services, while their religious beliefs may preclude them from certain treatment options. Healthcare professionals are specially trained to help their patients navigate supports available to them, and identify those that best align with your priorities, beliefs, and values. This is often referred to as the palliative approach to care.
At the BCCPC, Yue works to educate healthcare professionals across the province on how to best support their clients by adopting a palliative approach to their specific field of care. In a recent interview with Parkinson Society British Columbia (PSBC), she discussed the benefits of a palliative approach to treating and managing PD.
“When I worked in the hospital, there was a clear distinction between curative and palliative care,” she recalls. “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.”
Similarly to Yue’s experience, many people with Parkinson’s will encounter very different approaches to care based on where, and from whom, they are accessing it. Movement disorder clinics, and professionals with Parkinson’s-specific training and experience, are equipped with a better understanding of all the ways in which PD can affect one’s life, and the lives of their family members and loved ones.
“Most healthcare involves a team, but this is especially true in palliative care,” says Yue. “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.”
The Patient's Role in Palliative Care
Not all healthcare professionals may understand the extent to which PD varies. Parkinson’s can present very differently from one individual to the next – someone’s most prominent symptom may be one that another person with Parkinson’s has never developed. Even the most experienced professionals must understand their patient before beginning to treat their PD.
The crucial first step in managing any chronic condition is being an active agent in your own care, where “agency” is a patient’s power to make choices about their care in any context (Walach et al., 2018). Beyond their responsibilities of assessment, diagnosis, and treatment, healthcare professionals must provide advice to inform their patients’ decision-making. According to Walach and Loughlin (2018), “no amount of medical expertise can make [healthcare professionals] experts on which trade-offs are the right ones for [a] person to make in the context of [their] particular life goals.”
Being an active agent in your care means working alongside your healthcare team every step of the way. By staying informed about your condition and care options, and voicing your opinions, preferences, and concerns, you have the power to decide how your healthcare team can best serve you. While advocating for yourself may feel daunting, it is an important part of helping healthcare professionals make informed decisions and tailor their approach to best suit your needs. You are your own best advocate.
Be Candid
In order to create a comprehensive and holistic care plan, your healthcare team needs to understand all of the ways PD affects your life. This includes tracking your symptoms and experiences with PD, and keeping your team informed of changes to your condition. Do not hesitate to share any of your concerns with the healthcare professionals you trust – no matter their specialty, doctors, nurses, and allied healthcare professionals (AHCPs) across BC are trained to take a person-first approach to their work. Your healthcare team can provide referrals and help you navigate specialized services, treatments and therapies, financial supports, and other options available to address your unique needs.
Stay Informed
Across the globe, Parkinson’s researchers are continuing to make new discoveries about the causes, development, effects, and outcomes of the disease. Our understanding of PD is ever-evolving, and studies are frequently revealing novel treatment options to slow disease progression, manage symptoms, and improve function and mobility.
It is important for people with Parkinson’s and their carepartners to understand the disease and how it affects them, as well as all of the possible supports they may be able to access. However, some skepticism is always necessary. When researching Parkinson’s, always be sure to find credible and trustworthy sources, such as health authorities, healthcare professionals, medical journals, and non-profit organizations who work with medical advisors. Be wary of biased information that may be coming from sources that are selling or advertising alternative treatments.
For help finding information about PD, get in touch with your healthcare team, or your local health authority. Parkinson Society BC’s friendly and knowledgeable staff are also available to connect you with the resources you need at 1-800-668-3330 or info@parkinson.bc.ca.
Plan for the Future
Parkinson’s is a degenerative and chronic disease. Most people with Parkinson’s will require some level of support at some point in their journey with the disease. Planning for your future is the best way to stay proactive in your care.
It is never too early to plan for what may come next. While these can be difficult conversations to have, being prepared for the future can make a huge impact on improving quality of life for you and your loved ones.
As PD progresses, it may cause cognitive changes that can impact an individual’s legal authority to make healthcare decisions. In that case, a loved one can be appointed power of attorney to make these decisions for them. It is important to make your loved ones aware of the type of care you wish to receive in later stages of the disease, so they are prepared to advocate for you should they need to.
Talk to your loved ones and your healthcare team about the decisions you would like made about advanced treatments, hospitalization, in-home support, long-term care placement, mobility aids, home adaptations, and end-of-life. If you do not have one already, you should also explore your options for a comprehensive insurance plan to cover medical expenses and support services. It is never too early to begin planning and saving money for the future, and as your PD progresses, you can revisit your financial plans to ensure you are prepared for any next steps.
Beyond Healthcare
The palliative approach goes well beyond clinical care, providing psychological, social, emotional, spiritual, and practical support (Health Canada, 2018). Each of these factor into a holistic picture of overall health and wellness, comfort, happiness, and quality of life.
Psychological
Many people with PD will encounter mental health issues related to changes in their brain chemistry and function, or as a side effect of certain medications. However, the difficulties of coping with the disease, and all of the changes it brings about in one’s life, can also significantly affect one’s mental health.
Mental health requires the same care and attention as physical health. People with Parkinson’s can often self-manage their own mental health by maintaining health habits, though it is crucial to have somewhere to turn for support when needed, such as counselling services, support groups, social networks, or community access and assessment centres (which provide drop-in mental health services and multidisciplinary crisis intervention).
Any changes to, or concerns about, your mental health should be communicated to your healthcare team. There are many medications, therapies, tools, and resources available to help you manage any mental health issues you may encounter. Your healthcare team can help you explore the options that best suit your preferences.
Social
Social isolation among older adults is a significant public health concern across the globe. People with Parkinson’s, as well as carepartners, may be particularly vulnerable as a result of many compounding factors that make social connection, mobility, and community engagement more challenging.
Those who spend little time with loved ones, friends, and neighbours may be isolated and at risk for poorer physical and mental health. Social isolation can present a serious issue for the health, safety, and mental wellbeing of people with PD. A strong sense of community, and a tight-knit support network, are significant determinants of health outcomes.
Focus on spending time with family, friends, and loved ones to combat feelings of isolation. If you are not comfortable discussing your PD with the people in your life, consider joining a peer support group. They provide a safe, friendly, and supportive space to share with others experiencing similar difficulties. To learn about Parkinson Society BC’s network of over 50 support groups, visit www.parkinson.bc.ca/groups.
Emotional
Palliative care prioritizes the patient’s happiness. At every stage of your journey with PD, you should feel empowered to make informed decisions that leave you feeling confident and resolute. However, uncertainty and doubt are normal feelings to have towards your condition, and the decision-making often required of you as a patient. When working with your healthcare team, it is important to ensure that your emotional state is always taken into consideration.
Heightened emotions can cause us to misinterpret information. A positive outlook is necessary to plan for positive outcomes. Healthy coping strategies and self-care methods can help you maintain a balanced emotional state. Any activities that support you in doing so can be considered a part of your palliative care.
Spiritual
Spirituality offers us a way to interpret and understand our experiences; in general, it involves a search for meaning in life. For many people with PD, their beliefs are a central part of their identities, and inform their disease management, healthcare decision-making, and lifestyle. Prayer, meditation, and other spiritual or religious practices can also play a role in coping with challenges brought on by PD.
Unantenne et al. (2013) propose that spirituality and religion can encourage personal responsibility for one’s health and wellbeing, provide social connections and support networks, and promote feelings of hopefulness.
Practical
Parkinson’s can impact much more than your health, like your finances, housing, relationships, career, and family planning. A palliative approach to care ensures that you have access to resources to help you maximize your quality of life in all areas that PD may affect. Parkinson Society BC has a wide variety of educational tools available to help you find the practical support you need. Visit our website at www.parkinson.bc.ca/resources to view our full collection of resources.
Sources
BCCPC. Understanding Palliative Care. www.bit.ly/cpcbc
Health Canada. (2018). Framework on Palliative Care in Canada. www.bit.ly/hcpcfw
PSBC. (2019). Kathleen Yue discusses palliative care for Parkinson’s. Viewpoints. www.bit.ly/vptspalliativecare
Unantenne, N. et al. (2013). The Strength to Cope. J Relig Health, 52. www.doi.org/10.1007/s10943-011-9554-9
Walach, H., et al. (2018). Patients and agents. P.E.H. Med, 13. www.doi.org/10.1186/s13010-018-0068-x WHO. (2020). Palliative Care. www.bit.ly/whopalliative
This content was published in the Winter 2021 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.