Palliative (And End of Life) Care
When we think about our quality of life and what is important, we often don’t automatically think of Palliative care, however when you read the World Health Organization Definition of Palliative care it centres around promoting our quality of life throughout life.
World Health Organization definition of Palliative care.
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death
When you consider this definition and the treatments for Parkinson’s revolve around alleviating symptoms and ideally supporting you to have a good quality of life, the approach we take already incorporates elements of Palliative care.
Commonly there is a confusion between Palliative care and End of life. End of life care is the care delivered close to the end of life, while this follows the principals of Palliate care there is often a greater emphasis on managing distressing symptoms such as pain. Within many communities Palliative care is offered to people who have conditions such as Cancer where there are no more treatments which can be offered or that the treatment caused unacceptable side effects for the individual. Many people working within Palliative care have a desire to expand and make Palliative care available to more people including people living with Parkinson’s.
Taking a more Palliative focus puts people living with Parkinson’s in the middle, providing “person centred” care, looking at your quality of life and will promote treatments and therapies which support this. Palliative care is multidisciplinary and will involve offering support in a variety of ways, including medicine, physical and emotional therapies to address symptoms which are troublesome.
Planning Ahead, Advance Care Planning, Medical Directives and Living wills.
Regardless of what we call it or whether there is a legal structure supporting it, considering what care and treatments we would want is something we should think about and discuss with our families- even though this may be a difficult discussion to have. This may be developing a living will or advance care plan (legally binding in some countries) or a more informal discussion with your family and treating doctors to explain what is important to you.
To help develop this plan you need to consider which parts of your life that are important and gives you quality of life, and how your life would be if it was too difficult to participate in these activities. Things which give you quality of life may be relationships, memories or physical activities.
You should discuss these with your family and people who would support or make your medical and treatment decisions. You should also discuss this with treating physicians or your primary care doctor and gather information from them about treatments and let them know your wishes. This is a process of gathering information and helps in you making an informed and reasonable decision.
When you and your family are comfortable and are informed it is good to write your thoughts and decisions down. Some countries have a legal framework which supports this and makes it easier to document.
Thoughts and wishes may change over time so it’s important to keep this discussion going.
Emotional support
Thinking about the end of life and making major treatment decisions is emotional and can be distressing for the person living with Parkinson’s and their families. It is important to seek emotional or psychological support. Support may come from formal services, Pastoral care or through your informal network of friends and family
Access to Palliative Care
Across the world there are many different models and organizations who provide palliative care. Traditionally this has had a focus on supporting people who have cancer, but in many nations, there are changes and palliative care services will accept referrals for other conditions such as Parkinson’s Your local Doctor or Neurologist will be able to identify the most appropriate service or palliative care team who may be able to provide support.
Taking a Palliative approach to care - What it is and what to expect
When you look at the true definition of Palliative care, it is focused on managing symptoms and promoting autonomy and Quality of life. Palliative care may not always be available to you but letting your treating Health Care Professionals know about the parts of your life which you value a provide quality, enabling the Health professionals to deliver care which meets your wishes.
Conclusion
Thinking about Palliative care and how we might die can be confronting. However, thinking about what is important to you and identifying the parts of life which provide quality, pleasure happiness and comfort, provides a framework to discuss treatments with your doctors and health professionals and is a great way of taking control. Taking this approach encourages communication with your personal networks and within your treating team; it doesn’t have to be called “palliative care” but is care that puts you in the middle, supporting your quality of life, comfort and autonomy and is why Doctors and health care professionals are there.
Victor M McConvey, RN, MACN presented at the 5th World Parkinson Congress in Kyoto, Japan, and the 4th World Parkinson Congress in Portland, OR, USA. He was also on the WPC 2019 Program Committee. Victor McConvey is currently a Clinical Nurse Consultant and Health Team Manager at Parkinson’s Victoria.
Ideas and opinions expressed in this post reflect that of the author solely. They do not ncessarily reflect the opinions or positions of the World Parkinson Coalition®