This is where he wanted to be... at home. His wish was always to be at home when he died. His experience in hospitals over the years were sometimes not good. We were blessed with another 19 months together at home. We were given the support of a hospice and had privileges such as a visiting physician when needed, and all other needs during that time.
We did whatever he was able to do with the comfort of knowing that a personal doctor was available anytime should we need him. When his situation became worse, he had oxygen and anything else he needed. His last night, he was in his chair watching TV and I knew he had experienced a lot of heart pain that day, but he never took any medication for the pain, even though it was available to him. He was a strong, brave man who accepted his illness and did his best to live as best he could.
He died that evening while watching TV, in his chair, just as he had wished. I had all the instructions from the hospice as to what steps to take when this happened and this is why my husband died, with dignity, at home. No ambulance, no hospital, no expense to the system. A doctor from the hospice came and then the funeral representatives came (in the middle of the night) and took him to the funeral home. We planned it this way and the system worked for us only because of the hospice and the fact that we were referred to them by some very kind health care workers at the renal clinic, of which he had been a patient for many years. He had many good, caring doctors over the years who dealt with each of his problems but without my help to guide this care, he would never have been able to administer his medicines, nor follow instructions from so many different doctors he had needed over this long period of time.
How the confirmation of colon cancer changed one man's view of patient participation in healthcare and, more specifically, how patient self-management systems play an integral part in the healing process.
In January, 2012, on noticing on my eHealth report, that some of my blood results were “out of range”, I searched possible causes and discovered cancer was a commonality. I emailed my medical doctor suggesting that I might have cancer. My doctor referred me to an internist and a CT Scan confirmed colon cancer.
I had previously booked a two week trip to Hawaii, and after consultation with my doctors, took the trip to enjoy the sunshine. While away, I undertook a nutrient-dense nutritional program [http://phyto2health.com] and extensive exercise with the intention of enhancing my recovery after surgery. I drank considerable amounts of clean water and walked for miles, both in Hawaii and upon returning home.
In March 2012, I underwent colon resection surgery, removing eight inches of my colon. The surgeon reported that the cancer was within the margins and the B.C. Cancer Clinic advises I am statistically free of cancer.
I was discharged from the hospital within 48 hours of my surgery. On arriving home, I felt well and experienced no pain, nor illness. On Post-op day 3, I returned to work at my office. My medical doctor described my recovery as “astonishing.”
Subsequently, it was suggested that I join the British Columbia Patients Voices Network. That has lead to my participation in a number of projects, including appointment to a Vancouver Island IHealth Steering Committee charged with guiding the implementation of a single, integrated health record system to guide improved decisions, policies, standards, procedures and results for health care.
My colon cancer and subsequent experiences have convinced me that:
Enhanced Recovery After Surgery: ERAS programs, including Patient Navigators, can result in faster recovery from surgery, less pain, illness and discomfort resulting in a savings in health care costs. An ERAS program should include full electronic records, accessible to the patient as well as the health care providers.
Patient Self Management Program (PSMP), as part of an ERAS program and including a greater level of preoperative patient information and communication with clinicians, can achieve significant improvements in symptom management; reduce health distress, fatigue, disability and limitations on social activity; reduce reliance on medications; achieve fewer readmissions to the hospital and significant savings in public health care costs. Notwithstanding that patients may suffer significant physical and/or mental conditions which limit their ability to fulfill these responsibilities, there is a need for “Prevention and Promotion” initiatives to educate patients on the benefits of pursuing a lifestyle which promotes positive health well-being. A proper diet with nutrient-dense nutrition, adequate rest, drinking plenty of clean water and regular exercise, will reduce the incidence and severity of chronic disease, discomfort and overall health care costs. Many wish to pursue healthier diets, they don’t know where to start.
Psychological Adjustment: patients need to know that chronic disease, including cancer, too often labelled as potentially harmful and frightening, may not be particularly dangerous, and might be treatable as a chronic rather than acute condition, and that rushing to radical treatment may not be necessary. The key is to manage the existence of the disease, research treatment alternatives and to participate in a Patient Self Management Program. Many people live with cancer and other diseases for a very long time.
Finally, I believe that hospitals need to set a better example: vending machines and vendors in main hospital locations with unhealthy sugar-laden carbohydrates and drinks.