Just before Christmas 2013, I received a diagnosis of colorectal cancer at one of the commercial colonoscopy providers. I was given a choice of referral to one of two teaching hospitals in downtown Toronto. Being told that the quality of care was equivalent, I chose the hospital near my home with which I was most familiar - it was a wise choice. Within 2 days I was interviewed by a young (at least to me) physician who accepted the case and started the process. She indicated that she would try to achieve surgery within 4-5 weeks if the cancer had not spread. Subsequent MRI and CT scan did not indicate any requirement to reduce the size of the tumor. At the end of January, I walked to the acute care hospital for surgery. I was in hospital for slightly less than one week because my digestive tract did not want to start work, however, with great care, it finally did and I was discharged.
Subsequent pathology indicated that there was cancer in one of 25 nodes. I considered this discovery lucky because it may have avoided a recurrence of the cancer in other vital organs. After having a port inserted in my shoulder to facilitate the process, I started a 12 cycle chemo therapy which I completed today. I had a major issue with pulmonary embolisms (blood clots), which I ignored because the symptoms were similar to the usual problems of an aging body until it was almost too late. However, I survived nicely both the visit to the emergency department and the subsequent pharmaceutical therapy. Other than nerve damage (hopefully not permanent) in my hands and feet, the process was completed with some inconvenience but no major problems thanks to substantial support from my wife.
I next see the oncologist in a few months and will have the port removed in the next week or two. Now I have light after what was a very dark and frightening tunnel.
In terms of comments on the health care system, the system seems firmly in female hands. All four physicians that have played major roles in my case are female, very competent and rather tough. Several of my physicians had earned PhDs. My surgeon had a very significant publication list, and all had senior responsibilities in the hospital. This may reflect the culture of this particular hospital but I don’t think so.
My health care was delivered in a timely, competent and very caring fashion. Review of literature suggests that I could not expect better care anywhere else. My only expenses were for a private room. Pharmaceutical therapies were used to manage some of the potential side-effects of the chemo therapy. I had maintained private drug insurance continued on from the program offered by my initial employer so I would have likely had no problem. However, I was lucky enough to be over 65 so my drug needs have been met by the Ontario Drug Benefit Program. This is a real issue.
Health benefits from employers are very unequally distributed. We need a broad pharmaceutical insurance program if we want a healthy workforce and efficient use of our health care system. I would urge all readers to look into information available on a universal drug program. It is also an important moral and ethical issue.
The acute care system served me very well. I cannot speak highly enough of the competence, dedication and care provided by all the staff and physicians at all levels of the hospital. The advantage of a single-payer system is that pricing decisions did not affect resource allocation just acuity. This contrasts to the U.S. system with highly variable prices. The health care blog, Incidental Economist, has had several recent articles highlighting the highly variable US prices in the same market for the same services. Such price variation does not promote efficiency and the management of those prices adds unacceptable overheads.
Waiting time was not an issue for me. There has been a lot of discussion that the introduction of a private health tier would alleviate resource pressures in the public tier and facilitate access for less acute cases. Statements were recently made by think tank types about this. Peer reviewed literature for both Australia and England, where private tiers exist, shows that there is no justification for this claim by the think tanks. One of the major issues in the system is the heavy reliance on phone contact with patients. Observation of my fellow patients indicated many were language challenged, which makes verbal contact and retention difficult. Paper documentation of requirements could be shared with other relatives with more English competence. My major complaint was with Ontario's CCAC (Community Care Access Centre).
My chemotherapy was delivered over a three day period. The first day, I received an infusion of three chemicals at the hospital (after a checkup to see that I was in shape) and then at home, I was connected to a further pump (contained in a large camera bag) for 46 hours. This connection was done by a nurse under contract to CCAC who were responsible for seeing that the required equipment and supplies were delivered to my home and who “managed” my case. I had no written documentation of this process or any way (at least initially) to contact them except by phone. This left me very uncertain. Initially, the chemicals and pump were delivered from a commercial pharmacy in 905 territory the day before their requirement. As some of you know, road transportation in Toronto is challenging.
Because some chemotherapy sessions are cancelled because of patient ill health, CCAC decided to issue the order for delivery of the material only after the chemo infusion had started in the hospital. Initially, the material was being delivered late in the evening which meant that my nurse had to wait around downtown to service me. The uncertainty of delivery and the extra demands on my caregiver were really unacceptable and added significant stress to my life, I managed to obtain the email address of the relevant manager and wrote an appropriate letter of complaint with a copy to my oncologist. After several letters, service has improved significantly which reduced my stress. My general impression of CCAC is that their mission is to reduce costs rather than relieve patient stress. That has been confirmed by others who are not in a position to speak as frankly as I do.
My general impression is that the system uses much too much paper. Many reports and documents are hand written with substantial communications via fax. Having a private fax system meant that I could request delivery of appointment information and have something useful. Other people have to rely on the phone communication of appointments. For the English-challenged, this must add significant stress. I did not see any indication of completely integrated medical records. However, the hospital had impressive medical imaging systems so that the doctors could review test results quickly. Location of service delivery remains a real challenge. I was lucky enough to live downtown Toronto, a city with major teaching hospitals. I felt very guilty when I heard of the major transportation challenges faced by my fellow patients to make early appointments in a city that is being challenged by the automobile and bad governance. This is both an infrastructure and service delivery issue that could be radically improved but needs careful planning.
My general impression is that the health care system is still substantially undercapitalized and under-resourced. The challenge is that as health care technology and procedures improve, the scope of care continues to increase. They can do more for us and offer us a better quality of life but this requires more resources. Most of us would likely support this if we have a rational view of our own health care requirements. If we wish a productive workforce and society, we should support this in general.
Once patients enter home care, support for caregivers is crucial. This story is from a woman who asks the important questions once she assumes the role of his caregiver to her husband: 'Why aren't there caregiving classes as they do with new mothers for breastfeeding, or diabetics with insulin?'
To understand where I am right now, you need to understand where I’ve been. My husband Bill and I have been married for 28 years December of 2014. We have 4 children, 3 with spouses, and 7 grandchildren. We appreciated our life and are thankful for everyone in our life and what we have worked so hard to get. Bill has an older sister and I am an only child.
Twenty-five years ago, Bill slipped on the ice and broke his ankle. At the hospital we waited over 4 hours for medical attention. I kept going to the nurses’ station asking for ice and somewhere he could go to put his ankle up to keep the swelling down until a doctor was available. Each time I was told in no uncertain terms to sit down and wait my turn. When he was finally seen, his ankle was so swollen the skin was splitting and they could not set the ankle.
Fast forward to 2002. We retired, the kids were on their own and we looked forward to following our passion of travelling and living in other cultures. By 2006, Bill’s ankle hurt too much for us to walk, especially in Europe where walkways are unpredictable. Our GP recommended one of two ankle replacement specialists in Ontario. After a year of not being able to get an appointment she asked us to try to set up an appointment. We phoned, left messages, called again, left more messages until eventually we visited the hospital where this specialist worked and saw his admin face to face. We got an appointment in 2009 and the specialist said there was a four year waiting list for him to do the replacement. (Because the Ministry of Health had a push to speed up hip and knee replacement surgery, ankle replacements suffered.) We wrote to the Ministry of Health who said if we paid our own airfare and hotel, they would pay for the surgery to be done in Vancouver. We gladly accepted this and while the surgery and recovery would be difficult, we were excited that Bill would be well enough to travel in 2-3 months. So we went to Vancouver in April of 2010 and the surgeon replaced Bill’s ankle. The last time we saw that surgeon was the day of the surgery. When we returned 2 weeks after the surgery, we visited the Toronto specialist/surgeon who took over Bill’s care. The ankle was infected so he had six weeks of a pic line with antibiotics. If the Vancouver surgeon had done a follow-up appointment with Bill before we went home, would they have caught the infection in time? After week 4, the surgeon didn’t see any improvement in the infection and recommended removal of the hardware. He did this and put in an external fixator to keep foot and leg together and kept the pic line. Home care was set up and we were assured it would be seamless. We didn’t have a home care visit for 48 hours after we were discharged from the hospital. That meant no antibiotics for his pic line and no dressing changes. I went out and bought some stuff to do the dressing changes myself. When the home care nurse finally showed up she took one look at his external fixator and said, “I hope you don’t expect me to change the dressings on that, it’s disgusting!” This started my second career as a nurse. After 8 weeks he had the fixator removed and another set of ankle hardware inserted. Another infection, another pic line, more home care nurses, who by this time were simply monitoring my work.
After a few months, the surgeon examined Bill’s ankle and saw he had a cracked heel, and wanted to do another surgery - fusion - to try to screw it together. At his pre-op they discovered Bill had moderate congestive heart failure and atrial fibrillation (heartbeat at 172 bpm) and couldn’t get it down without regular medication. His ankle surgery was delayed for 6 months to stabilize his heart but eventually took place. Another infection set in but again was controlled with a pic line and antibiotics, which I was looking after as well as wound care. However, after several weeks it was apparent that the fusion wasn’t healing properly, so 3 months later they did a revision – the fifth operation – and again back to antibiotics and wound care, and still on crutches (Bill was prescribed to be off his feet from September 2013 to May 2014).
At this point there is so much hardware in his ankle his x-rays show all metal pieces going every which way and they could barely hold the skin together with stitches. His last appointment with the surgeon shows a collapsed talus and he wants to do more surgery but didn’t book an appointment for 6 weeks to see if anything changes. What can change? Will it magically heal? Another 6 weeks of waiting. Bill is still on crutches after almost 5 years.
Bill has had over 100 x-rays, numerous CT scans, and 5 surgeries in the last 4.5 years. Two years ago he developed a heart condition. Did the stress of the last few years cause it? We have lost years of our retirement. We don’t know how much time we have left to do the things we want, but we know we didn’t want to spend it in hospitals or waiting; waiting for the next appointment, waiting for the next surgery, waiting for a response, waiting, and waiting.
Is anyone thinking of Bill has a whole person, except me? I am frustrated with the surgeon’s admin because perhaps the outcome would have been different if the surgery has been done before the ankle had deteriorated so badly. I am frustrated with home care because they are unable to provide quality care, so I have taken it on because I care about the patient. I am frustrated with the surgeon because he’s not looking at the whole patient. Every surgery Bill has is a strain on his body, heart, circulation, stomach (from meds), boredom, mental frustration, etc. I feel the surgeon is focused on the technical aspects of what the problem and solution is for the ankle and not looking at the big picture. Who is thinking about all of this? Me. Our life is on hold. I now have many new responsibilities. I am trying to help my husband with his physical ailments and keep his spirits up as well.
In addition to his heart and ankle issues, Bill learned last year he shouldn’t be eating gluten so I have had to restock our kitchen and learn new recipes. As well, because of his digestion issues, he can’t eat leftovers, so no cooking big meals and freezing to save time. He also has other health issues which I need to track and look out for. I have had to learn medical terms, techniques, wound care options and become conversant in ankle replacement technology. I look after the family gift buying, organizing family time, taking care of the dog, groceries, errands, cooking, cleaning, etc. Imagine trying to get Bill (at 6’10”) into and out of the bath keeping his one foot off the ground. The effects of the medications, pain killers and anaesthetics have made Bill’s comprehension and thinking process very slow so it is left to me to think of and ask pertinent questions, make plans, push for answers, coordinate health care professionals, etc. Fortunately, the surgeon includes me in the conversation and has responded to emails when it is an emergency.
All of these health issue responsibilities are in addition to my day-to-day activities. I have rheumatoid arthritis and outside interests, all of which have gone by the wayside to make room for these added duties. I miss having grandchildren for sleepovers, spontaneously travelling somewhere, visiting friends, taking courses. Neither of us were prepared for the amount of time and energy this has taken.
What is disappointing is that I was not given any information on caregiving. So many times I felt I was drowning and totally overwhelmed. I don’t know how many times I cried because I couldn’t keep up with the learning curve. I was expected to be the strong one; reassuring our children and friends and keeping up appearances. Family and friends offered to help, but really what could they do? If someone had shown up with a meal, that would have been welcomed, but with Bill’s diet, I think people don’t want to tackle it. No one is interested in helping with the medical issues. There has been no one for me to talk to who can really understand what I am going through and offer helpful advice. I have been so busy and so exhausted that it never occurred to me to look for help. The last 5 years have been so stressful. What are the cumulative effects of this? What happens to Bill if something happens to me? What needs to change?
Before discharge, the hospital should provide caregiving classes as they do with new mothers for breastfeeding, or diabetics with insulin. These classes should also be made available to anyone who is caring for a family member by advising GPs and specialists of their availability. A better relationship must be forged between the hospital when discharging and home care organizations. The patient/caregiver needs to see a seamless handover. Doctors/surgeons need to consider the whole patient, finding out what else is going on in the patient’s life because it will affect recovery. They need to invite the patient and primary caregiver into the conversation early and keep them informed of the short and long term plan. When things don’t go as planned, they need to include the patient and primary caregiver in available options and agree on the path forward. Managing expectations is critical.
Home care professionals need to be trained and conversant in medical advice not just on wound care but in emotional issues as well. These could be suffered by either the patient or the caregiver. Officials should be alerted if the despondency or difficulties are ongoing, for more specific assistance. This is especially true for seniors. The administrative staff in the health care system need to be sensitive to the plight of the patient by making every effort to ensure the patient sees the doctor as soon as possible and raising red flags to the doctor if the wait is too long (6 months) as defined by the Ministry of Health. Patients and their caregivers should be routinely asked by the surgeon/specialist if they are satisfied with the administrative services without fear of retribution.
The Ministry of Health needs to recognize, acknowledge and provide assistance for caregivers because they are supporting the health care system without pay or training. When we left Vancouver, the surgeon had not looked at Bill’s ankle since the day of surgery. If the infection had been caught earlier, would he have had to have the external fixator? It should be a requirement by the Ministry of Health that follow-up must be done by the surgeon within 10 days of the surgery. If, when Bill originally broke his ankle, the medical team had triaged Bill properly and given him ice, elevated his foot and tried to set his ankle before it was so swollen, would we have had the last 5 surgeries? There needs to be follow-up on surgeries to determine if they were successful. And, if complications develop, why and what could be done differently?
What gets both Bill and I down is that there is no end in sight. What started off 5 years ago as a 3 month recovery period has turned into years of pain, worry, anxiety, frustration and more pain. At this point we have talked about whether amputation is an option. We will pursue it at the next appointment with the surgeon.