Greetings one and all…
Happy New Year to one and all. It’s hard to believe we are knee-deep in 2018! I hope you and yours enjoyed a blessed holiday season. Now that the festivities are over, I am focused on plans for the year. Part of my preparation process is dreaming up new ideas for educational programming for the coming year. Once done, I dive into resources to gather the needed insights and information to enrich my message.
This year, a topic of particular interest is how to effectively navigate the health care system in order to access the needed and desired care when confronted with a chronic, progressive, or terminal illness. Listening to the voices of health care professionals as well as caregivers and care receivers, my belief that knowledge is fundamental to managing all aspects of care (for ourselves and our loved ones) has been validated. If we assume “the right” plan of care will emerge from the dense fog of health care options, we will likely become victims of the system. I don’t know about you, but that likelihood makes me incredibly uncomfortable.
So, my message today is this—be part of the conversation. Ask the questions and secure the needed information to make informed decisions about health care options. Identify and articulate your preferences for care—what is acceptable and what is not. Critically assess the proposed plan of care and understand the implications/consequences of all proposed interventions. Furthermore, be proactive—don’t be shy! Don’t wait for an invitation to participate in the discussion. If your health or that of a loved one is the subject of conversation, take a seat at the table and participate in the creation of a plan of care.
This type of respectful discourse with all concerned parties (care receiver, caregivers, family members, friends, and health care professionals) encourages collaboration instead of confrontation. Granted, it takes time, effort, and intention to engage in this process of shared decision making. But in my humble opinion, the result justifies the initial investment—that being patient-centered care that takes into consideration the potential benefits and burdens of treatment as well as patient preferences and values.
You might be interested to know that patient-centered care and shared decision making are fundamental principles of palliative care. “Palliative care is a philosophy of care that recognizes cure is not always possible, but care always is. Palliative care is a specialized approach to care for persons with serious, chronic, or terminal illnesses. Curative treatments combined with palliative measures ensure the holistic care of the patient and the family. It is not enough to merely treat an illness. Palliative care serves the person—mind, body, and spirit. With a focus on the alleviation, anticipation, and prevention of suffering, palliative care enhances the quality of life for all involved.” (Barton, Caregiving for the GENIUS, 2013)
To further stress the importance of being part of the conversation and process, I recommend two recent publications by palliative care physicians. Extreme Measures (Dr. Jessica Zitter, 2017) and Life After the Diagnosis (Dr. Steven Pantilat, 2017) are books that provide both information and inspiration to actively participate in designing a plan of care. If our wishes for medical care are to become our reality, we must participate in the process.
Personally, I don’t believe participation is optional. Instead, I believe it to be our responsibility. By so doing, we minimize the likelihood of dehumanizing, detrimental interventions and maximize the possibility of compassionate, patient-centered care. So, don’t be shy! Ask questions. Discuss the various options. Articulate your preferences for care. Work with your health care providers to make your wishes become your reality. A good thing indeed.
I look forward to the ongoing conversation. If you have specific questions or concerns related to your caregiving experience, I would love to hear from you. Until the next posting, I wish you and yours countless blessings…jane
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