Palliative Care, A Caregiver/People's Initiative = Success

By now anyone reading this blog site will have come to the conclusion that I believe firmly that economics has driven the health care agenda since the mid 1970’s, and they would be correct. When health care costs rose annually faster than the GDP, inflation, and population growth, it was perceived by most politicians early in Medicare’s history that it was not sustainable. When Calgary citizens and doctors became unhappy in the early nineties, the Alberta Government sent senior bureaucrats from Edmonton with the message that there was not a health care problem; there was only a “perceived” health care problem. When this idea was rejected, the new mantra became: “patient orientated and patient focused”. At this point I became very concerned because my experience in buying horses had told me that the seller usually represented the worst feature as the best feature. The theory was that you can see the good features, so, if we can only defuse the negatives the average “buyer” would go for “the package”.
Meanwhile, in Calgary a very positive movement was growing. Caregivers in the field of Palliative care were aware that surveys in the/90’s indicated that 60% to 70% of Canadians wished to die at home if possible. These care-givers were also of the belief that the goals and objectives of the patient, after full disclosure and discussion, should be the primary “driver” of the care given. This movement was not cost driven but compassion driven and was a “grass roots” endeavor by care givers from various levels of the health care team. The Calgary region was approached and agreements made in an environment of cooperation. The Region benefited by freeing up expensive acute health care beds (hospital beds) and the community benefited by obtaining resources in place BEFORE the program was actually implemented. Unlike the above scenario, note that the increase in home care was precipitated by early discharge from hospitals, and inability to access hospital and nursing home beds but did not have the buy in of community physicians and care givers because of inadequate resources in the community.
Some physicians saw the development of a palliative home care program (a minority), as an intrusion into their community domain. Most of us, some who were already doing home palliative care, were ecstatic. Planning and focus groups were held jointly with the Region, community care physicians, palliative care specialist, nurses, other care givers, and any interested parties, including the public. Dying at home, with dignity, slowly became a reality for many Calgarians.
Much has been said about the need for health care providers to work as a team. In Calgary’s Palliative care program the physicians in a certain area of the city consistently worked with the same palliative care nurses and palliative care specialists. We developed confidence, pride and trust in each others work, expertise, and contribution. On one occasion I recall a palliative care nurse answering my call while she was in a facility having her own personal mammogram performed. She new I would not page her unless I thought it was urgent. Compare this to trying to get urgent attention for a new “home care patient”. First, I would have to contact an “intake worker” who would want me to spend at least 15 minutes providing information including such things as whether anyone smoked in the house. The case would be assigned to a home care nurse that I probably didn’t know. I was given no time frame as to when the patient would be seen.
I think the success of the palliative care program in Calgary is a good example of what ingredients are needed for innovation to work in health care. There has to be a perceived need and that need has to be patient driven, not cost driven. There has to be “buy in” on the part of care givers, and for that to happen the care givers and patients must be empowered to pursue common goals and objectives. A by-product of a good innovative project is that it would have a cost savings or be cost neutral, but in health care, the primary driver for innovation should not be and cannot be cost driven!