How do you get a team started ?
Health Care Professional – South East:
Our team began in 1979. A committee of interested staff was formed. The committee included: an Administrator, Director of nursing, a Physician interested in palliative medicine, and Pastoral care. The team was formed and the first few months were spent planning and in preparation. The philosophy of palliative care was developed, admission criteria, procedures for care, bed designation, education for staff, developing the role of the volunteer, and so on. From the beginning a leader was available to the community, churches, and business organizations, to tell of the hospital’s response in developing the program and how this will improve patient service. It was also made known that the program was not Ministry funded. The community response was quite extraordinary. Businesses, community and church groups raised money for special projects. Money was used to redecorate patient rooms and family lounges. A volunteer training program was developed and classes were offered each year. Part time nurses were hired and sent for special education to specialize in pain and symptom management. This is how the nurse consultant role evolved. Bereavement support was added and now follows the family for a year after death. The community outreach program was added as well as the day Hospice program was also added.
Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON:
Get representatives of various disciplines together to network and discuss how to best support patients through to the end of their life. You must have a leader; it does not have to be a physician. You must have a relationship with dedicated CCAC Palliative case managers who know the patients. You ask each nursing agency to send one or all of their Palliative nurses to connect with you to get buy-in from them to support the initiative. We have an APN in Palliative Care and a Nurse Educator in house. We work with the Palliative Nurse Clinician from the hospital who knows the patients in hospital or keeps us updated about their hospital stay. If you have a hospice in your area ask the Home Coordinator or whomever does the assessments before patients are admitted to work with you. Start with a core group that includes these people and then expand. Canvas other disciplines to find persons with an interest in supporting Palliative patients. We have relationships with an Occupational Therapist, a Hospice volunteer coordinator, the Wellspring Cancer Support Network and a Spiritual counselor as well.
Palliative nurse practitioner – Niagara North:
I was the last member to join this group. The funding for my position was part of a provincial initiative for palliative nurse practitioners and this team was already forming so as I understand it that is why I got positioned here. Right place right time.
Clinical Navigator – Niagara North:
I began my work as Clinical Navigator before the team began seeing patients. I used the time before our first patients to wisely prepare all the proper forms to be used. I compiled an ‘Office Resource’ binder that included everything the team might need such as; all area physician names and contact information, local pharmacies, churches, funeral homes, etc… We were ready to go once the team was finally formed and patients were admitted.
Health Care Professional – Central LHIN:
Our team began through a proposal for the Central LHIN for Aging at Home funding. Three agencies and palliative experts identified the need for expert pain and symptom management support and education in the community and long term care. It is important to involve pain and symptom management experts in the community to support and advise the planning process.
Health Care Professional:
First of all look at the resources there are within the local team, within the environment, community, long term care home, first nation etc. Look at the strength each service or community member brings to the table, for example, in Long Term Care Homes; the resources that they have are the personal support workers who do most of the bedside care, they have registered nurses, they have dietary aids, and then they have community partners like hospice volunteers who would come in and assist them, or pain and symptom consultants. In a first nation’s context, they have a local home community care program with a nurse and a support worker, an elder’s worker, a cultural and spiritual worker, and in a rural community they may have general physicians, nurses, and a mental health worker. The players can vary from community to community, setting to setting, but really looking at the resources that they can bring to the table in the team would be the first step in getting started. Once you’ve brought those people together, create a common vision for how you want your palliative care team to function, what are the goals that you are hoping to achieve. In most of my experience; in all of those settings they want to help people have a good death, support families, and they want to allow people to have the choice to die at home, if that’s what they wanted and if that is possible.
Health Care Professional:
In our long term care home we started a palliative care resource team in order to provide the care that we wanted for our residents. We developed the team by bringing together everybody from every department. We bring issues to the table as they happen and we have everybody’s input on it. When we started the team, PSWs gave us important firsthand experience. They were the first ones to recognize problems or changes in the residents, and realize things were missed. Having a large number of PSWs on the team has been really wonderful for us. It was a challenge getting these people [PSWs] to join the team, to help them understand the importance in the very beginning. PSWs really weren’t looked at as the people you would go to for answers and a lot of them did not feel comfortable being the person to say “this needs to be changed”, or “we need to look at this resident a little closer.” That’s changed because of our project, the quality of palliative care and long term care, the team empowered the PSWs and it’s been a wonderful movement in our home that’s made a lot of difference. To build momentum, I looked to rally people who could each give something different: the strong people that I knew did want to make a change and a make a difference, the people that were very strong minded and were quick to notice different things and speak up, and the ones with the most compassion and understanding. In the end we found that all of those wonderful things can be found in one person, and we thankfully have a lot of that exact person in our home.
Health Care Professional:
In developing a team we can get stuck thinking “what does that expert team need to look like” and “how are we going to do this?” One of the things that we’ve done in our region is go back to the drawing board and start with “what are the patient and family needs?”, and “who’s the best person to meet those needs?” Palliative care is such a broad concept so we pay particular attention to those needs that are just good care. We made sure the family physicians, community nurse, nurse practitioner at the family physicians office, nurse at the hospital, ER doctor, and all of the people who surround a patient, have the skills to provide basic, good quality palliative care. Finally, we identified what supports they need if they don’t have the expertise and skills to manage things when they get a little more complex. All of this builds on the core principal of “what are the patient’s needs?”
Health Care Professional:
After 35 years in hospice palliative care we realize that there really is no right way or wrong way to do this, there’s just their way. This means it [care] has to be patient and family focused. Gathering all the skills and wisdom you possibly can together and then trusting and realizing that just the existence of the team is probably the most powerful thing you can do for the families, for the patients, and for fellow caregivers.