These patients are not just the elderly, in Toronto alone 170 children die from chronic diseases each year and most of those die away from home in a hospital setting.
Today the 2011 State of the Union for the Toronto Central Palliative Care Network took place at the University of Toronto headed by S. Lawrence Librach, MD.
Very few of us in Canada will die from an accident. Most will live a long life and near the end of life deal with one or more chronic illnesses. One in five Canadians have three or more chronic diseases. Ninety percent of disability related costs are related to chronic disease. The reality is that as we age as a society more people will die at a greater rate. What will the end of life care be like for us? Unless changes are made end of life care will be chaotic and patients will deal with invasive measures that are unwarranted instead of their pain being dealt with effectively. Improvements are needed in the referral process to palliative care and hospice services and the waiting times need from ER to hospice needs to improve.
When we think of how health care dollars are spent it's often thought that the elderly place a high burden on society. The truth is the majority of health care dollars is used by Ontarians who are 30 to 50 years old. Most elderly Ontarians are healthy until their last two years prior to death.
For far too many palliative care could be introduced far too late in the dying process. Some will never hear what palliative care they could be offered as the medical profession fights to save their lives. This fact is highlighted when you consider that 10 percent of those who die in hospital do not have a record of their death being in hospital.
Palliative care is the specialized area of healthcare that focuses on relieving the suffering of patients. This care can come at any stage of treatment including those nearing the end of life and emphasizes the quality of life for the patient and their loved ones.
For the Toronto Central Palliative Care Network's State of the Union the focus was on the end of life for those in Ontario. Despite the fact that most people, excluding cancer patients, will have more than one chronic illness at the time of their death the medical profession as a whole at times appears to be in denial about the end of life. The medical practice has become so good at treating illnesses in the past century that death is rarely discussed. This is across the board when you consider that chronic disease plans out of Ottawa do not mention dying. Yet the fact is we all die.
"We need to look beyond hospital beds. There is a need to look at the home level."
Palliative care can improve the quality of life of patients. Instead of focusing on treating late stage disease patients can focus on living without pain. So why are patients not being served at a better rate at the end of life? For one the funding dollars are tight and for another many of those who would be best cared for in the palliative setting are being cared for at home until a medical crisis. Another hindrance is that even for professionals navigating through the system is difficult. Patients have a slew of case managers as their diseases progress. At some point the question becomes who will coordinate the managers of a patient's care so that their best options at a good quality of life while dying is achieved.
The goal of palliative care is to reduce the need of emergency room visits. This action alone would save Canadians millions of dollars yet there is a lack of palliative care staff for many. The ministry of health says there is no money for more positions within palliative care medicine. Many of the patients that could benefit the most from palliative care live in home settings which include Long Term Care facilities. When using mobile ER nursing services instead of emergency room visits those in this type of setting can avoid being admitted to hospital which often hastens a person's death. Yet the medical community is not referring patients to palliative at a good rate. Instead patients are placed in nursing homes where there isn't a palliative care approach and suffering because of it. Simply consider pain management. In nursing homes around the clock pain medication can not be delivered for all patients in the time periods that these patients require it.
We don't know the clear numbers of how many chronically ill patients in need of hospice care beds there are in Ontario. The numbers are not being tracked other than in cancer care. Those in need of these beds are often not simple patient cases, non-cancer patients are generally sicker and have a shorter period of life compared to cancer patients. These patients include the young. In Canada pediatric palliative care is 15 years behind adult care in terms of research. Children's end of life care needs though differs from adults. Ontario has basically ignored the mental health of dying children.
"These are the needs of the people," Librach stressed to the audience.
So how do we as Ontarians address these needs? Librach said that when the public begins to demand good palliative services and hospice care they will get it. If the concerns are not demanded then we will remain in a system where only 30 percent of cancer patients receive palliative care.
Marian Walsh, CEO of Bridgepoint Health Care Centre, said our emergency rooms are under siege. These visits are the main entry point to hospital and the beginning of the waiting period for Long Term Care.
"In the beginning people died young from infectious diseases. During the beginning of the last century we started controlling infectious diseases. It wasn't until the 1950's that studies on aging began. Today there are not many cures but we are very success at treating diseases. Today's dying patient often has a number of illnesses they are dealing with at the time of their deaths."
Seventy percent of health care costs are related to chronic disease. Each year Canadians pay out $80 billion dollars for chronic diseases yet the system focuses on acute care, the treat to street approach.
"As we age the reality is that chances are we will have a variety of chronic illnesses. These illnesses can be complex. The end of life will be a longer period of time and a more medically complex one," Walsh said, "We need to change health care to bringing palliative care into the forefront to improve the quality of life. There are more needs than just pain management."