By: Jane Teasdale
What I would like to share is a caregiver journey that I experienced with my father’s passing in 2008. I was very lucky to be surrounded by friends and colleagues from the health care industry – from the hospital to the community agencies –and lucky too that I understood a good bit about navigating the system and being proactive. I preach this in the many presentations I have given to professionals, seniors and baby boomers, so I felt I was well versed. Both my brother and I work in the homecare industry so between the two of us, my dad had an excellent team. In addition, 15 years ago, I was the caregiver for my mother who died of breast cancer, offering my experience in this kind of situation. I kept her home until towards the end and then moved her to the hospital for the last couple days of her life.
The journey began when my father and his girlfriend were preparing for their annual trip abroad (they were going away for over a month). Before they left, I was going through the usual, “where are your documents?” routine; power of attorney, travel documents, travel insurance, contact numbers, insurance policies, etc. He kept a file in the house and showed me exactly where everything was kept, including the safety deposit key if I needed it.
Two years prior, my father had discovered small spots on his bladder that turned out to be cancerous. He underwent surgery to have them removed and the doctor said he had gotten everything. He was a man that was healthy and independent. He loved to garden and was an avid golfer. He had a clean bill of health to travel.
Early Morning Call
While they were in Portugal I received a call from his partner very early in the morning saying that my dad wasn’t eating, had stomach pains and was a bit jaundiced. I had a feeling this wasn’t a good sign so I asked for her to take him to see a Portuguese doctor for blood tests, ultrasound, etc. I spoke to my dad briefly too but his voice was so weak. I immediately got on the phone to my brother in Victoria, B.C., and gave him a heads up on the situation. Since my father had appointed me his Power of Attorney for Care, I was able to speak to our family doctor, who was also my dad’s doctor, to advise her on what was happening in Portugal. She wanted the test results – the blood work and ultra sound – sent back to her.
The tests from Portugal were faxed to our family doctor and she read me the results (I was given this privilege because of my Power of Attorney for Care): there were cancerous spots on his liver. My dad and his girlfriend were not told in Portugal. Meanwhile, I was on the phone with them trying to explain that according to the family doctor, they needed to be back in Toronto as soon as possible. The next task was dealing with the medical insurance, airlines, doctor in Portugal. Could he handle the flight in his condition? What would happen if he became ill on the plane? What does the medical insurance cover and were the airlines liable? I kept my brother informed so he could organize his life, work and family before coming to help the family in Toronto.
The Flight Home
My father managed the flight, but barely. Jaundiced and losing weight, he couldn’t keep his eyes open or his hands from shaking. He couldn’t concentrate very well either. I had my dad and his girlfriend make notes of what had happened in Portugal from when the symptoms started, what tests he had been given, the results from the doctor and how he was feeling. Once he arrived in Canada, the first step was to visit the family doctor so she could explain exactly what the tests from the ultrasound in Portugal had shown. She told him her diagnosis. My father was then admitted to the hospital where more tests confirmed that he had developed stomach cancer in addition to the cancerous spots on his liver. His legs were swollen and I could see we were going to lose him shortly.
The oncologist wanted to try chemotherapy and my father agreed, wanting a chance to see if it would work. My dad was very weak, unfortunately, and I don’t think the oncologist understood how rapidly he had declined from a healthy gentleman to a man near death. The only ones who could see the decline were ourselves and our family doctor. As it turned out, it was not very long before my father was moved to the palliative care floor. His condition had continued to deteriorate so rapidly that the chemotherapy had been ruled out as an option because he would not have had the strength to endure treatment.
In Canada, At the Hospital
Our family arranged a schedule while he was in the hospital so that there was always somebody at his bedside during the days, evenings and nights. He needed a lot of care in the night and there was no way that I was going to allow my dad to be alone. Looking back, it would have been useful to hire in a caregiver to be at his bed side but we had organized enough family members to manage without becoming too exhausted.
From conversations our family had with my father in the past, we knew that he wanted to come home to die with dignity. He did not want to spend his remaining days in an institution. He wanted to look out at his English garden, smell the cooking in the kitchen, listen to his favourite music with all his books and pictures around, hear the noises of the house and neighbourhood in which he had raised his family, and to hear the birds singing. He wanted his girlfriend holding his hand, his grandchildren laughing and playing outside, his children giving him hugs, rubbing his feet and legs, and taking orders from him regarding his final wishes.
Gathering Resources & Planning for Home
The next task then was to move him home from the hospital setting with the proper supports in place. I asked the hospital staff for information about the Freeman Centre and the Temmy Latner Centre. The Freeman Centre is located at the North York General Hospital. They provide palliative care in the hospital, support for the palliative care team in the client’s home regarding medical and pain management, and can offer valuable advice regarding community resources. The Temmy Latner Centre operates out of Mount Sinai Hospital. They provide end-of-life support services to family members and can provide a doctor to visit in the home to direct pain relief management. I also thought it was beneficial to connect with a local hospice in the area so I asked the hospital staff more about Alliance Hospice. Hospice organizations offer many services that revolve around palliative care, including counselling services for adult and children, or caregiver support provided by trained volunteers for short periods of time.
I spoke to the local Community Care Access Centre (CCAC; publically-funded homecare services in Ontario) about procuring help for my father. They suggested putting him into Baycrest Palliative but I knew this was not a very good option. My dad had less than a couple of weeks to live and I knew that this short outlook qualified him for the 56 hours of care provided by the CCAC.
Bringing Him Home
Upon discharge from the hospital I wouldn’t allow my father to leave the hospital until I knew CCAC would be in that evening, that the hospital bed, special air mattress, medical supplies, pain medication, diapers and hospital table oxygen had all arrived before the ambulance was called.
Once he arrived home we arranged all of the services he was receiving to suit our unique situation. We decided to have the caregiver provided by CCAC to come in during the evening until morning so that we could all sleep (or pretend too, at the very least). During the daytimes, we had St. Elizabeth Health Care provide nursing staff and we employed a personal support worker (PSW) from Premier Homecare Services who was experienced in end-of-life circumstances.
One thing that Premier Homecare Services did was to make sure that we would receive the same caregiver everyday to look after our father. This allowed things to run smoother since we only once had to explain how my dad wanted his food, how he wanted his cushions placed, when he wanted his bath, or how he liked his water with a lemon in it. The caregiver built up a relationship with my father and my father trusted her. We trusted her too.
The Whole Family Experience
Our family came to trust and rely upon the many people and organizations that had been helping us during this emotional roller coaster. Circle of Care provided the social work aspect since we had small children, family members and my father too who benefited from some in-home professional counselling. Palliative care nurses and PSWs, family doctors doing home visits, older grandchildren, my dad’s girlfriend, my brother and I – we all took shifts so we would not get burnt out. And what a time we had!
It was a highlight and celebration when father was comfortable in his own room to watch his soccer on television – his home team Middlesbrough United playing an epic match. After that celebration he quickly declined each day and it took almost one and half weeks before his passing. I can honestly say that my brother, myself, my dad’s girlfriend and all our family fulfilled my dad’s wishes to prepare him for the journey to the next life.
The following are important points that families should do or discuss with your family members before the inevitable happens:
- Contact hospice in your area and educate yourself on palliative care. Alliance Hospice 416-385-8885, Dorothy Ley Hospice Etobicoke 416-626-0116
- Circle of Care provides bereavement programs and workshops, individual counselling contact 416-373-4093
- Temmy Latner Centre 416-586-4800 Ext. 7884
- The Freeman Centre – North York General Hospital 416-756-6000 palliative care floor.
- Attend local health fairs so you are up-to-date with agencies in your community.
- Contact your local Community Care Access Centre (CCAC) for a list of community agencies (there are different governmental agencies in each province).
- Keep a file of resources for yourself to share with your children/family members/power of attorney.
- Ask to speak to a social worker to guide you through the process. Your experience can depend on the social worker and the knowledge and experience they have off community services and providers so arm yourself with your own knowledge and ask, ask, ASK!
- Research retirement homes, homecare agencies, community agencies, long-term care facilities, etc., with your family so you have some sort of a plan of action when the time comes. Keep a file of the community resources and store it near your power of attorney and other legal documents so you can find it whenever there is an emergency
- Use other community agencies such as Parkinson’s Society, Alzheimer’s Society, hospices, senior centres, your local hospital (some hospitals have brochures and information on the floors for the families) and Meals on Wheels.
- Who has the power of attorney? Where are the documents kept? What are your loved one’s wishes? Discuss with your family what your wishes are about anything – homecare, retirement homes, what your wishes are towards end of life care, funeral arrangements, etc. – so they know and understand what you want done.
By: James Watson
The Canadian healthcare sector faces an uncertain future. With the demands of an aging population looming, many critics question whether the sector is up to the task. I am sure many people have heard the argument and understand its basic premise but here it is again: baby boomers & consequent aging population = healthcare crisis. An aging population will increase the demand upon the healthcare sector’s resources and the current state of the system will be unable to meet increasing demands. Changes – BIG changes – must be made to prepare and meet the challenge.
Now here is some good news: I am not the first one to think or write about all this. Policy-makers, government agencies, hospitals, nonprofit organizations and private businesses have been planning for this for quite some time. Even still, it is difficult to say whether we will be prepared. I would like to illustrate the complexity of this problem by taking a closer look at a particular service that Premier Homecare Services provides and is well-versed in. Palliative care or end-of-life care is a topic that has been gaining more and more attention (deservedly so) in the healthcare sector and should illustrate the problem well.
Palliative care is a complex service with many component parts like in-home support, bereavement support, care team support, children’s support, information & education support, pain relief and symptom management. Each of these services may be provided in its entirety or to a certain extent by different providers and organizations. For example: A hospice may provide substantial bereavement support and children’s support but may be limited in how much caregiver support it can provide. On the other hand, a private agency like Premier Homecare Services can provide 24 hour caregivers but cannot provide professional bereavement support or children’s counseling. The reality is that substantial planning is required to coordinate all of the different services and providers, to the extent that the service and provider landscape can quickly become a maze.
This sort of confusion is symptomatic of the looming problem in the healthcare sector facing an aging population. There are so many service providers, organizations, agencies, companies, institutions, bureaucracies, initiatives, aging-at-home strategies and 25 year outlooks claiming to have the solutions that many individuals and families suddenly realize they do not have the knowledge or experience to determine which option may be best in a care situation. Add to this the inherent stress and intensity of the circumstance and it quickly becomes a Catch 22 of information overload.
A colleague of mine with Hospice Toronto (hospices are nonprofit organizations dedicated to providing palliative care and beds) offered me some statistics on death and end-of-life conditions in Canada:
According to the Canadian Hospice Palliative Care Association (CHPCA):
- Approximately 259,000 Canadians die each year;
- Each death affects approximately 5 family members and/or caregivers;
- With the advancement of treatment therapies, Canadians are living longer in declining health for much longer periods of time than ever before;
- Many Canadians will die with at least two chronic diseases; and
- With our aging population, deaths in Canada will increase over 27% to 330,000 deaths annually by 2026, and 29% to 425,000 by 2036.
As the population ages and advances in healthcare technology extend life and prolong end-of-life conditions, the demand for palliative care services will increase substantially too. The question is whether the current system will be able to meet the forecasted demand.
Palliative care delivery and the healthcare sector as a whole could be made more efficient if access to different service options is improved. Some professionals are already in place to assist this. Social workers, for example, perform highly undervalued work in advising families during their crisis.
The great problem facing the healthcare sector may not only be whether the service capacity exists (while this is still a very important concern) but whether someone can figure out how to procure the help they require. Knowledge is the solution here and a priority must be placed on public education. Empower the public by educating them about available services before a crisis occurs. Empower professionals like social workers by providing service pathways clear of bureaucratic obstruction and lethargy. Empower Canadians to secure the healthcare services they deserve. In order words: allow for and encourage self-directed care by Canadians as they age.
Here are some additional links to some palliative care related websites:
- What is Palliative Care?
- Palliative and End-of-life Care
- WHO Definition of Palliative Care