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Stories can lead to change

Your health care experiences reveal authentic patient priorities, including

  • Where health care design or delivery could be improved
  • What constitutes patient and family-centred care
  • Ways to improve the patient experience
 
June 2016
Community care, the end of the first tunnel
Jun 2, 2016 1:06 PM

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.

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