Paula Miller, February 2019, wished for the inclusion of electronic health in cancer care!
Paula Miller was a wife, daughter, sister, cat mom, a professional and a cancer patient. Intelligent, with humor, empathy and disarming honesty, she faced metastatic breast cancer for almost 6 years with realism and responsibility.
She did not give in to the aggressive disease, and through her quest for knowledge, her active participation in decisions for her life and health, and good communication with her doctors, she remained aware of her situation. She redefined what “quality of life” meant to her at every stage of her disease and subsequently determined her own action plans.
Her wishes for the future of oncology care in Greece are reflected in her own words and thoughts in the text quoted below, and which she sent to PAMEMMAZI a few months before she passed.
Paula wished for the inclusion of a "digital health system" to help and support cancer patients, as well as for easily acquiring knowledge of side effects, psychological support, & dietary/nutritional care. She also discussed the importance for caregivers' access to knowledge and support. A year later, Digital Health is here and Paula continues to be a strong voice for all cancer patients.
The journey of a cancer patient, thoughts and recommendations for a better quality of life
- Depending on the type of cancer, to "create a form that the patient can download from the internet" and which should be created with "cooperative input from doctors, nurses, psychologists, social workers" so that the patient, from the first appointment, can ask questions of concern to him/her about the disease and treatment, "practical issues of everyday life and psychological issues" concerning the patient and his/her family environment.
- A text in plain language about the "diagnosis and its most common consequences".
- Economic consequences: "The financial issue" is very important and even more so when the disease progresses in the long run. How much will the hospital cost? What does EOPYY cover? What will group employee insurance or patient's personal insurance cover? How imaging tests and diagnostic tests are covered. Where they should be done and if EOPYY covers part of the cost when they are done in private clinics.
- A list of ideas on "how a caregiver can help effectively". Many times people close to the patients, their relatives and friends, ask how they can help and patients do not have ready answers.
SURGERIES, TREATMENTS, EXAMINATIONS, QUALITY OF LIFE:
It is very important to "create an electronic file, a system for scheduling, organizing and archiving". When the disease progresses and at the same time the patient works, the "organization of appointments, check-ups and medical results are absolutely necessary".
Keeping a diary.
- For treatments, examinations, medicines. This diary should include reminders- When are treatments, tests, medications and dosages scheduled. In this diary there should be the possibility of entering other obligations and appointments because the patient's life must be continued and combined with other activities, professional and recreational. Maybe also be accessible on smart phones.
- "Recording of side effects", what are the changes observed, "how the patient feels psychologically", weight tracking, "diet, exercise program".
Archiving system. Registration, electronically or in a file, of all examinations, results, medical notes from medical visits, medicines and their contraindications, nutritional supplements.
PRINTED/ELECTRONIC INFORMATION on the side effects of the treatments. The patient / caregiver should know and not be surprised.
-Impacts on appearance and how they can be treated, what are the options.
- Impact on diet, practical advice (eg ulcers and diet, easy recipes) and "who are the experts that can give reliable advice".
-Importance and effects of oral hygiene. What are the indications that patients and families should pay attention to in order to consult specialists in a timely manner.
-Other possible side effects, depending on the type of cancer and the treatment that may occur and how they are treated.
THE DIFFICULT DECISIONS:
For many of us, the time will probably come for difficult and more difficult decisions:
- "to stop work".
- "to continue or not to continue the treatment"
- how and where we would ideally like our last days or hours to be.
And in a country like Greece where DNRs, advance directives, etc. do not apply, one must have convincingly communicated the most difficult decisions for treatment and the final wishes to doctors and especially to the family and therefore have thought about them beforehand.
It is important for the patient to understand his/her rights, some of the parameters that can affect quality of life, how he/she may balance some "want" or personal philosophy with some "must" that may be imposed by religion, loved ones and doctors. What help can we get from specialists (eg psychologists, social workers, doctors) so that we can communicate our decisions to loved ones, and for our loved ones to accept those decisions. It is, of course, a very sensitive topic and it must not seem like the patient is being led to a decision, but there just need to be some parameters that the patient can think about, some recommendations to speak to someone so that the patient can also feel more comfortable with his/her own decision.
Contributed by Paula Miller, February 2019