6 weeks and she was gone!

In the fall of 2015 my mother became ill with what was believed the flu. In Cut Knife where they lived there is only a health facility with a nursing home and rotating physicians on certain days. So they had to travel 30 minutes to a facility in North Battleford for her illness. Her sodium was low and at the time they were not able to find the cause. It was corrected and while she was waiting for the respite bed in Cut Knife her care was turned over to a GP as per the hospital policy.  Within several days our mother began to deteriorate again and we were unable to get any satisfactory answers for diagnosis and plan of care. The GP refused to meet with us at the hospital (despite saying we would come at anytime) and that we had to make an office appointment if we wanted to speak with him. As an RN of 37 years I had never encountered such a request of a family and ethically I knew it was very wrong. My sister and I did make the appointment as we needed some answers. I am not sure he had ever done any type of thorough exam on our Mom as he was not able to answer many of our questions about blood work results and other tests. He did tell us what he had ordered for treatment for her. He was ill prepared to speak with us and especially someone who is in the medical profession. Upon returning to the hospital and discussing with the nurses what he told us he had ordered (we actually had recorded the conversation) the nurses were stunned as there had been absolutely nothing ordered or communicated. We insisted that the specialist be brought back in and she was horrified that our mother was still there and no one had contacted her and that she had deteriorated drastically. Within a few days her sodium was once again corrected and she was on her way to respite in Cut Knife. She was only there for a few days and again deteriorated and was taken back to North Battleford. At that time her sodium was 120 and she was very ill. A CT scan was finally ordered and it was discovered she had lung cancer with mets. Once again her sodium was corrected and arrangements were made to try and get her to Saskatoon for biopsy and possible treatment. Unfortunately a bed never became available!!  We met with Palliative Care in North Battleford. We were given some very useful tips on how to manage her care and lots of reading material. We were told that all her expenses would be covered, meds, ambulance rides, incontience supplies, equipment, etc.  There was not a palliative care bed available for her to go to in North Battleford and so she was in a room on the maternity ward.  We eventually had to make a decision to take her back to the respite/palliative care bed in Cut Knife as a bed had not opened up in Saskatoon yet and we were in jeopardy of losing the Cut Knife placement. The respite/palliative area in Cut Knife is wonderful. Large room for the patient with an adjoining room for the family with many amenities. What the staff lacked in education and resources for palliative end of life care they made up for with their compassion and kindness. My mother always had a family member with her as she was so ill and I as the nurse in the family stayed with her the most and provided the majority of her care. I did call the palliative nurse a couple of times and did get suggestions for pain management but the Dr. On call and the RN on did not listen to their recommendations. I had to educate myself on my mother’s medical condition and found that I then had to educate the staff why certain things were done, etc.  It was evident there knowledge was limited and so for any facility that provides palliative care there should be some kind of educating going on in regards to end of life. I certainly felt her pain management could have been dealt with better if they had listened to the experts recommendations.  It is impariative that families have someone to advocate for them and as a family we felt we had to do it constantly. Because the palliative bed is in the nursing home once she returned there we had to meet with the home care nurse and do the paper work because if she had lived longer despite her cancer she would have become a nursing home client and would have had to pay for her stay based on that. It was a stress that my mother and her family did not need at the time. Within approximately six weeks of our mother falling ill she passed. We provided the majority of her care and never left her side. So my recommendation is that it be encouraged to have family entered care at end of life. At the time we went through it it felt like it was taking forever and when she did pass it was like it happened in the blink of an eye!  Following her death we received bills from the health district for ambulance rides, supplies, meds, etc.  Talking with the palliative care RN left us befuddled as he had told us one thing and then another happened. He informed us our mother was a deemed only a small percentage palliative and that’s why we had to pay. He did not know that she had died and with in six weeks!  So I am not sure what it takes for one to be 100% palliative care and for these things to be covered!  Worrying about a bed, paying for items, poor medical care at times, not being able to access beds for biopsy and treatment in a timely manner, etc., etc are the last thing a patient and family should have to worry about!  The common thread we heard over and over is that there is not the resources available for good end of life care/palliative care. Perhaps in larger centres this is not such an issue but in rural areas it definitely is! For our mother because I am a nurse I rarely left her side and provided her care. For our Mom and our family who rallied around her it was the one last gift we could give her and she was surrounded by great love.