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.
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.
Told from a family member's perspective, this story demonstrates how elderly patients are at risk without reliable and continuous communication among the patient, their loved ones and the provider who is chiefly managing his or her care.
My father (Mr. M) died in 2010. His primary care doctor failed to give his patient the appropriate medical care and attention required to sustain a good quality and healthy life, thus resulting in his death. While under his primary care doctor's care, Mr. M had several medical issues, including diabetes that required insulin injection twice per day and blood testing and reading, high blood pressure, high cholesterol, glaucoma and cataracts in both eyes, poor blood circulation in his legs, and a triple bypass heart surgery in 2003.
His primary care doctor was aware of all aliments that Mr. M suffered, and he seemed very attentive to Mr. M in the beginning, working with him to ensure good health care. He later started home medical visits to Mr. M approximately once per month. However, in late 2008 the level of care progressively deteriorated and so did Mr. M’s health. He began losing a lot of weight rapidly and became very weak. I visited him once or twice per week and noticed this ongoing change in his health. I called the doctor several times and spoke to him personally advising him of my many concerns. He advised me he would check into it on each occasion we spoke. He also said that he would have a public health nurse visit Mr. M to help administer his medication, as he also recognized the changes. However, that did not transpire.
I became increasingly concerned as Mr. M became extremely weak and lost over 50 lbs or more, so I called his primary care doctor again. He said he would do a blood test, but this too never transpired. One day in June 2009, I was so concern and had lost faith in the doctor’s care so I started my own investigation and reviewed Mr. M's medications and noted that he had not been taking them, as all the containers were untouched. I asked Mr. M why, and he said he was too weak to administer his own injections and open pill bottles.
Historically, Mr. M had always been good with his medication intake and held a healthy weight. As I noticed his medications were untouched, I called the pharmacy where he gets his prescriptions filled as required. The pharmacist knew Mr. M very well and advised that he had not filled his prescription for at least 3 months. I was so shocked. I immediately went to the pharmacy to refill fresh prescriptions and sought a quick lesson on how to administer his insulin and other mediations. I called Mr. M'sprimary care doctor and asked how 3 months could have passed without him checking to ensure Mr. M was taking his medication, or at minimum attempt to determine why he was becoming so frail and lethargic.
He advised me that Mr. M does not come to the office, so how was he suppose to test him properly? I reminded the doctor that, historically, when he wanted Mr. M to be in the office they called me for his appointment and I have always taken him to attend the appointment or an agency was in place to take him to his appointments as required. His primary care doctor also advised me that he had not given Mr. M, his geriatric patient, a full medical for 3 years. I told him that was ridiculous! I believe this is medical care negligence. I was so scared that I took him out of his apartment that day, as the doctor had put Mr. M at such great risk - I thought, and he looked like, he was going to die.
I brought him to a local hospital to have him medically cared for and examined. He was in very bad shape. He weighed approximately 160 lbs, down from over 200 lbs. He was so weak and unable to stand on his own. I later moved him to my home and sought new residence for him closer to me and a doctor who would care for him properly and professionally. But by this time so much irreversible damage had already transpired, he would never be the same again. I was fortunate to get him residence in a senior building with an assistive care program that was able to maintain his daily medication and hygiene on a regular basis. Mr. M got somewhat stronger but never fully recovered. He started falling more, which led him to the hospital April 2010 for precautionary reasons. However, the lack of medical resources and care ultimately led to his death on October 26, 2010 in a local healthcare centre.
My dad died this date, and the hospital never warned or called me or his family to his bedside to say goodbye while he was still alive; he died alone. We were on our way to the hospital to attend a meeting with the doctor to determine whether to pull the plug or not. When we got there I mentioned I was going to visit my dad before the meeting and the nurse said he passed half an hour ago.
I want to ensure that this does not happen to another patient that cannot fend for him/herself. The healthcare system failed Mr. M. His failing health that ultimately led to his death began as a result of his primary care doctor's negligence. I brought this case before my province's regulatory college who later advised that decisions were rendered to counsel Mr. M's primary care doctor on better communication with family regarding health of patients who are receiving care at home, and increased consideration for escalation of care for patients who cannot be appropriately cared for at home. I was not satisfied with the outcome.
My husband was experiencing a painful sore throat though only on one side, and he did not have a fever. He gargled with salt water, yet 2 days later it was worse, causing much pain when he swallowed. We headed to a walk-in clinic as our family doctor is a 35-40 minute drive each way. From experience we know he cannot see us the same day. We arrived at the walk-in clinic around 9:30 am. Our wait was approximately one hour, the waiting area was very clean and staff was courteous. The doctor saw my husband, discussed his symptoms and took a swab of his throat for testing. He said it would take 24 hours for the results to come back. The doctor said the clinic would call him if they discovered something that needed treatment. He also advised us that recently some of his patients had been diagnosed with strep throat, and there was a virus circulating that caused symptoms that mirrored those of my husband.
July 1st, my husband woke at 5:30 am saying that his pain was even worse and asked if I could take him to the local hospital emergency department (ED). We arrived at the hospital parking lot around 6:30 am. It was our first visit to this hospital, as we recently moved to the area. We parked and headed to the ED entry at which time we began hearing from a loud speaker a voice welcoming us to the department. It then went on to advise us that staff were entitled to respect, and to use a mask provided just inside the revolving door; the message was on an endless loop.
Here's my suggestion: A live person’s voice recording would lend a “human” dimension to this communication.
The outside glass on either side of the revolving door as well as the revolving door, was dirty, finger marked and had a number of hand-made posters, poorly written/scrawled, hanging lop-sided, so one had to bend one’s neck to read them.
Here's my suggestion: Where are the environmental/maintenance folks? Cleanliness from the entry way to everywhere inside inspires confidence in patients, not to mention more respect. With computers and all types of materials to make signs and posters, the way in which patients are greeted with upon entry makes an impression.
Immediately inside, we took and put on the masks provided. There were a collection of wheelchairs scattered about this area, around which we had to navigate in search of the Triage Desk.
Here's my suggestion: having wheelchairs organized in a space away from patient traffic would pose less of a navigation hazard. A poorly hand-made sign pointed to the right, which we followed, then came upon a room on the right side which was the waiting room for Triage. No one was in the waiting room nor was anyone sitting at the Triage desk. If triage staff must be away from desk, please leave a sign advising walk-ins where to find a staff member; what if I could not have left my husband to look for someone? I told my husband to sit in the waiting room and I would go and find someone to help us. A minute or so later I saw a hospital staff member and advised her that we had just arrived and no one was at Triage. She said “go and wait in the waiting area and someone will come.”
Here's my suggestion: An apology, or saying something comforting like, “let me get the Triage staff for you right away" would have been appreciated. We sat. A couple of minutes later the Triage person arrived and took a seat behind the desk without looking at us. She then looked up, saw us and called out “next” for my husband to come to her desk.
Here's my suggestion: An acknowledgement by the Triage member was called for here; instead I perceived we interrupted something she was doing and we were an interference in her job. My husband and I both approached the Triage person sitting behind the desk, which was behind a glass panel that had a small circular opening in it. There was one dirty looking, black plastic chair in front of the Triage area for the patient.
Here are my suggestions: Wouldn’t it be nice to have a clean chair in a hospital. and nicer still, if the person accompanying the patient had a chair to sit on? This would make it easier for caregivers to converse with Triage if the patient needed help answering questions or providing information. Instead, that person, the patient’s wife in this case, had to bend down to speak through the opening and stay that way to hear the questions and provide information to assist the patient. My back and knees hurt after a while in a stooped position. The Triage person was expressionless and took my husband’s medical information without looking up from her computer.
I’m sure there was no malicious intent on the part of the Triage person; her behaviour however, loudly communicated she was unaware of the fact that two human beings were in front of her: a patient in much pain, unable to concentrate on providing her information she required to complete her job, and another person who was worried about her husband and also experiencing pain as a result of bending down to talk with Triage. Her people skills were nonexistent.
With the information taken and without looking up at us, she told us to “go down the hall to another waiting area, give this (materials) to the nurse at the station, and your husband’s name will be called.” Again, she could have used people skills saying something to the effect of, “thank you for your information, I’m giving you this paperwork which you will give to the nurse at the station in a seating area, just down the hall to your left. There you’ll wait for the doctor to see you."
Three people were waiting in this second area. Signs were posted all around us, advising that patients would be seen in order of priority, and to be respectful of staff or one could be asked to leave.
Here's my suggestion: Perhaps the signs could have been more people-oriented, instead of intimidating.
After an hour and a half my husband’s name was called and someone directed us by pointing the general direction to another wait area, there a doctor would see him. We waited there about one hour. The doctor was a welcomed relief - pleasant, the first staff member we’d met since arriving that seemed human, and he was the fourth staff person with whom we interacted. After interviewing my husband, the doctor advised they would do blood work and accompanied us to where to wait for a technician. (Great people skills.) We waited another hour, then the technician called my husband’s name. Blood taken, I asked the technician “approximately” about the wait time for results and was advised approximately one hour.
Here's my suggestion: The technician did not advise us how long the results would take, I had to ask him. He could have been more people-oriented as he's a medical professional and knows roughly how long these procedures typically take. We were sent back to the second waiting room to wait until my husband’s name was called over the loud speaker.
After about two hours, I approached a desk where three people were seated behind glass. As I approached, a young man stood up, not because he saw me coming, but to stand while he talked on the phone.
Here's my suggestion: His appearance was intimidating, as he was quite dishevelled – I didn’t want to talk to him but we were exhausted waiting. Once his phone call ended he looked at me expressionless and wordless. Intimidated by his appearance, eye contact and demeanor, I said as gently as I could “excuse me, my husband had blood work two hours ago and the technician said that it would take approximately one hour for the results. We’ve been here two hours and we haven’t heard his named called."
Assuming I was a terrific burden in his day, I adopted a more submissive, hesitant approach and said “excuse me, we were advised to wait but I’m wondering if we have been sitting in the wrong wait area and maybe missed hearing my husband’s name. The young man, expressionless, hardly looking at me, asked “what’s the name?” He entered my husband’s name into his computer from a standing position, muttered something, without looking at me, about results being back. He made a call and said to whomever picked up that my husband's results are back, and he’s waiting for results. The young man was in the middle of telling me to sit down and wait when my husband’s name was called over the PA.
In conclusion, we are never coming back to this ED, I don’t care how far we have to go. We headed back to the same area where we had seen the nicest person we encountered, the doctor, and sat to wait. Approximately 40 minutes later the doctor arrived to speak to us where we were seated. He said the blood results were fine, and if the sore throat persisted that he should gargle with salt water. We thanked him and left.
Checking the time expended in this visit to ED, it was 1:00 pm.- it had been six and a half hours since we first arrived. We paid the exorbitant parking fee and left. We should have called Telehealth Ontario and asked them to call all ED's to inquire to the shortest ED wait time. I have called Telehealth four times in the past and they have always told me to go to ED.
Here's my suggestion: Maybe patients and family caregivers should call the ED (or check on-line) to see what the average wait is before going to any ED, or perhaps walk-in clinics could remain open 24 hours a day.
I once burned my leg inside my thigh with a cup of boiling water. I was wearing corduroy slacks at the time and the burn was painful and severe; however, I refused to go to ED because of long wait times. Instead I treated myself at home and went to a walk-in clinic two days later when a blister had formed.... the wait time was an hour.
Follow-up from visiting our family doctor
This happened on July 3rd. Our family doctor can rarely see us the same day. We like him a lot and never will move or give him up for anything. He’s younger than we are, so we're hopeful he will see us to the grave. Plus, he’s hip to technology, great to talk with, demonstrates compassion, is knowledgeable, he answers our questions and always referred us to great specialists when needed. He referred my husband to an ENT (Ear, Nose, Throat) specialist. His office had to make the appointment with this ENT for us, and informed us that they'd call us with a date. My husband’s sore throat started to subside somewhat, but we were both anxious to discover the problem. Our family doctor’s office called a week later, advising my husband can see him in mid-September! Our ED experiences have been lengthy waits, though not so 'people-unfriendly' for years. We’ve used ED services maybe five times in the last 15 years. Hopefully, things will improve.
Early in February of 2013 I underwent an endoscopy and colonoscopy at a hospital in the Greater Toronto Area. Near the end of the procedure I awoke to overhear a conversation between my specialist and his assistant in which I learned the diagnosis was cancer, that treatment would be radiation only, no surgery. I said nothing about overhearing the conversation but waited to discuss it directly with my specialist.
I prepared a list of questions and discussion points in preparation for my next appointment. When I entered the office he immediately told me I had cancer, and this is what he would do for his mother, that it had been sanctioned by “the committee”. I was told surgery was the usual treatment with a resultant colostomy but because of my polio history I would probably not get removed from a respirator and my treatment would be radiation only. I tried to have a conversation with him about breathing issues, the logistics of getting to radiation (I use a power wheelchair and live in Toronto), the side effects both temporary and permanent of radiation, and the consequences of having no treatment. He became very irritated. He went back to his desk - he had been pacing - he signed an already prepared form, told me I would go for radiation five days a week, for six weeks. He abruptly got up from his desk and opened the door as a signal for me to leave. His last words to me were “I’ll see you in a year for another colonoscopy”.
I left very upset. I left his office with little more insight into my condition than on my arrival. I was not informed of the type nor even the exact location of the cancer. Not only had decisions that would have a major impact on the rest of my life been made for me without consulting with me, they had been made on assumptions, misinformation and non-information and I was offered no recourse to question it. I made an appointment with my family doctor from whom I learned that the diagnosis was adenocarcinoma of the lower rectum, confirmed that I had been referred to radiology only, and because I was so distraught, referred me to the oncology clinic to talk with someone. The request was ignored.
Fuelled by my dismissive treatment, I armed myself with knowledge gleaned from various sources. All were consistent in the recommended treatment for rectal cancer - surgery - no matter the stage. Some radiation may be done before, during or after surgery, but surgery is the gold standard. Radiation only is done solely in cases where the patient is too ill to withstand surgery. Clearly I did not fit into that category. I was further spurred on by a CT scan that determined a Stage 1 cancer. The possibility of a “cure” loomed on the horizon. I sought a second opinion. I was referred to a surgeon at another location. The difference in respect shown to patients was night and day.
A comprehensive history was taken, a two-way conversation actually took place and further testing was done. Surgery was not questioned. All this took time. New tests revealed that the cancer was now spiking and beginning Stage 111. My question to the committee is “If surgery had have been performed in a timely fashion when it was first diagnosed, would it have reached Stage 111?”
Surgery is now behind me. I have a colostomy. I’m learning to live with my new reality. I’m living a fully independent life in my own home and gradually resuming my old activities. If I had agreed to the “radiation only” option, assuming logistics could have been worked out, I would in all probability be residing in a nursing home, perhaps still with radiation burn, in feces soaked diapers for the rest of my life. I’m very grateful to the surgeon and the team that gave me a fighting chance at quality of life and did not just dismiss me as “not worth it” like the first specialist had.
I’m requesting a copy of the minutes of the portion of the committee meeting in which my case was discussed. What I want to know is who represented me at that meeting? Who spoke for me? Did anyone question the validity of my specialist's assumptions regarding breathing issues? Did anyone ask for concrete evidence or suggest a second opinion? Did anyone suggest a spinal with light sedation as an alternative to conventional anesthetic? Did anyone question the consequences of radiation burn for someone who sits in a wheelchair full time? Considering the location of the tumour with the almost certain destruction of the sphincter muscle, did anyone question what quality of life would be like post radiation? Did anyone ask any question on my behalf or was it just a rubber stamp and “next”. I fear the latter.
I’m assuming, perhaps falsely, that every member of a committee that makes life and death and quality of life decisions for faceless people know best practises and the consequence of each treatment option. I’m alleging that, in my case, disability, age and gender, in that order, played a far greater role in my specialist's and the committee’s decision than did “best practise”. False assumptions were made with regard to my physical condition, my intellect, and my capacity to make my own decisions. I am requesting a meeting with the committee chair, one or two other committee members, and any other interested persons, to discuss this with me in person.