Palliative care is for the living, not just for the dying!
Palliative care is for people like me who are living with serious or terminal illness. While my slow growing Stage IV lung cancer is “dormant” right now, and only causing occasional shortness of breath and zero pain, it is an ever present fact for the rest of my life.
Peace of Mind
To help me on this frightening and complex journey, I engaged the services of a team of two internists who specialize in palliative care. They have been working with me since I was diagnosed. From the very first two-hour interview I knew I would have two caring advocates, generous emotional support and a high level of sophisticated medical care, guidance and follow-up.
In addition, my anxiety level immediately went down knowing that my primal fear of suffering from the pain of cancer and the poisonous treatments that might be recommended by the oncologist would be mitigated by timely, aggressive pain and symptom management and guidance in decision-making based on my personal goals!
My team has been has been contributing mightily to my peace of mind and my family’s, in ways large and small.
For example, when I was hospitalized for two and a half weeks with a life-threatening reaction to a new Targeted Treatment for lung cancer, my team conducted not one but two family meetings right at my bedside, while I was hooked up to all sorts of IVs dripping fluids and medications into my veins.
My three grown children, my brother and sister-in-law, in various combinations as they were able to be present, attended these important and highly emotional meetings. Sick as I was, I talked to them straight from my heart about my reasons for refusing harsh, debilitating, curative measures to extend life at my advanced age of 85, at the expense of my quality of life.
It was an opportunity for me to tell my children what I hope for them as a family after I am gone and to remind them that they remain in relationship with me as long as they live. I’m still their mother, even when I am no longer physically present here on earth. It also provided an opportunity for them to ask questions directly of the medical team without having answers filtered through the biases and fears of me or other family members.
Genuine Coordinated Care
In addition, while I was in the hospital my palliative care doctor visited regularly and was in charge of orchestrating the care I received from the other specialists which for me included the nephrologist, the gastroenterologist and the neurologist. Because I was in my community hospital, he saw to it that the specialists who were needed were my own community doctors rather than whoever just happened to be the attending doctor on the floor that day.
He made sure that all medical providers were communicating with each other about my situation. He always supported my asking all doctors why they wanted to do a particular test or procedure and what they would do with the information gained, which helped me make informed decisions, avoiding unnecessary treatments and procedures. He was my chief source of information, advocacy and support throughout my hospital stay and after.
He intervened regarding my persistent and very painful headaches by prescribing the temporary use of steroids.
And he follows my care knowledgeably and compassionately now that I am home.
PEARL OF WISDOM
Palliative care is for any person at any age and at any stage of a serious, life-threatening illness. If it is available in your hospital or community, I urge you to explore the possibilities and to take advantage of it to manage pain and symptoms and lower stress for the sick person and the whole family!
© 2017 Joan Blumenfeld