Frequently Asked Questions

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.

Health Care Professional – South East: The team is well known in the community for a number of reasons. The program has been around for 34 years and is very well respected by the community. It is promoted by a number of organizations that help to fundraise.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: Anyone can refer a patient to the Palliative Care Team. CCAC brings all their palliative clients to the table. Due to numbers in our community we really only want to deal with cancer and ALS or end stage cardiac or renal patients. We cannot possibly manage all demented patients even if they are deemed palliative. In the 105 minutes of our team meeting we struggle to get through what is now about 100 patients. All the key disciplines on the team advocate for the team. The Cancer clinics in Hamilton, Mississauga and Toronto are all aware of our team and refer to us. We have had a significant number of our patients come onto the team as a couple. That means that after one has passed away the other usually wants the same level of support.

Palliative Nurse Practitioner – Niagara North: Thus far we have not had to actively “promote”. The community nurses know we are here, we meet every 2 weeks as a broader team for rounds, we have met with hospital discharge planners and collaborated with the ER to avoid admissions and facilitate continuity of care. I am an employee of CCAC and I am positioned on the palliative team so I work closely with the care coordinators as well.

Clinical Navigator – Niagara North: Our office is located inside a Medical Building that houses 12 physicians, the word got out quickly that this team was in place.

Health Care Professional – Central LHIN: We do regular presentations and education sessions for the CCAC, for primary nurses, parish nurses, family health teams, community health centres, hospitals and the cancer centre. We also facilitate interprofessional rounds in the community at 9 different venues across the LHIN, where patients are reviewed and education is provided.

Health Care Professional – South East: The turf wars may have happened in the early days but it is now well know that everyone plays an important role in the care of palliative patients and their families. All providers work together as a team and I do not think there is any overlap or redundancy.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: Our biggest challenge can be the Family Doctor of record who says that they want to care for the patient until the end. But they often are not comfortable with pain and symptom management and they do not want to be accessed urgently when a crisis develops. These are often our patients who end up going to ER because of pain. When you work as a team, as we have, you grow together and you learn to respect what each and every one of us brings to the table. We can all learn something new every day. We strive to support each other. I try personally to encourage the nurse to email or text me at any time even if it isn’t one of my patients. We mandated a long time ago to try to support our patients as best we can until the end.

Palliative Nurse Practitioner – Niagara North: Many hands make light work. It takes the whole community to make this work. There is no turf war because there is always plenty of work to go around.

Health Care Professional – Central LHIN: We are very clear that the HPC team does not provide hands on care. We have worked very hard to develop relationships and the trust of the community nurses and palliative physicians. We work in partnership and help each other to be successful.

Cheryl Moore, Director, Stedman Hospice: I always say “does it matter who’s doing what when it’s all in the best interest of our patients and families?”

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: It’s important to acknowledge that turf wars will happen. It is a type of organizational linear thinking natural to a group of people. By anticipating this phenomenon you can see it starting, step back, and adjust thinking by vocalizing what is needed by everyone and making sure it gets done. When we do that, we find common ground and role clarification emerges.

Russell Goldman – Director, The Temmy Latner Center for Palliative Care: To avoid turf wars, I worked really hard to build trusting relationships with the other providers in the region. Fortunately I’ve been working in the field for a number of years and know the front line workers. As such, we partner very closely with the visiting nurses, with the CCAC, the care coordinators, and we are really fortunate to be able to bring those front line relationships and that sort of credibility, forward to an administrative level. That trust with front line workers is imperative.

Health Care Professional – South East: We meet every 2 months with CCAC Case managers and the nursing providers. Cases are discussed in order to make improvements. We also celebrate the cases that went well. All issues are discussed and resolved.

Helen Pyle – Lead Physician Ian Anderson House, Oakville, ON: Sometimes with humor. Sometimes just with honesty. We have had situations where patients have been discharged from hospital and the nursing agency has been switched intentionally or accidentally. That has often caused great friction when we try to understand why. We do inject levity in these meetings to break tensions. We will share quirky stories about pets, hoarding, family dynamics and even death.

Palliative Nurse Practitioner – Niagara North: No elephants that I know of.

Health Care Professional – Central LHIN: It depends on what the situation is however; our focus is to be patient centered, so we like to begin all discussions with the patient in mind. When we identified specific barriers, it was important to work as partners with open and honest communication. Face to face communication is key to fostering understanding and communication.

Cheryl Moore, Director, Stedman Hospice: You have to talk about the issues, “call a spade a spade”

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: You need to name the problem, or at least someone needs to have the courage to name it. You need to be professional, gracious and clear. Transparency and clarity on an issue is important for trust. These ‘elephants’, in my experience, are never one offs so you need to develop a safe space to hash out the common ground and common vision.

Health Care Professional: Somebody needs to have the courage to raise that issue and have to be really conscious of raising it in a way that you’re not blaming people, you’re not pointing fingers, you’re really trying to point out there is an issue here, it’s getting in the way of what we’re trying to do. Then we need to have a discussion, we need to get the team members or players that are involved with this issue together even if it’s a conference call, somewhere where there’s a way we can communicate about what’s going on. The focus needs to stay on what we’re trying to do; provide the best care for someone at end of life. If there is something that is a consistent problem that keeps on coming up we have to be able to say it and sometimes there’s a release in the room when people can actually say yes, that is a problem and it’s getting in our way. It’s often processes and bureaucracies that are getting in the way of us being able to achieve what we need to achieve. So if we can be brave enough to say it, say what it is, we can then begin to deal with it. We can create ways of improving our own situation, ways of getting around any obstacle and focus on creating a better outcome for our patients.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: We try to ensure that everyone has an opportunity to ask whatever questions they have about any patient or any topic. We make sure that we are empathetic when answering any question no matter how basic or complex. But the longer the nurses are with the team the more challenging their questions have become. We also have nurses for whom English is not their first language, and they are invaluable for our patients who don’t speak English. I recently had a lady in her last five days of life who only spoke Polish. Fortunately we have a nurse who also speaks Polish, so we made a request to ensure that this nurse assisted this patient. It required a switch of agencies and our request for our polish speaking nurse to make the patient and family more comfortable. It worked really well!

Palliative Nurse Practitioner – Niagara North: Dr. Dooler and I have worked together in a similar collaborative relationship. We keep the communication very open. We share and ask questions of one another and we brainstorm weekly ways to optimize care plans.

Clinical Navigator – Niagara North: We are very fortunate to work in a small office where we all share the space. This allows us to communicate daily about patient concerns. As a team, we are all aware of the role each team member plays and the contributions they make; and we all have the highest respect and appreciation for one another. We work in a way that is best for our team and for our community.

Health Care Professional – Central LHIN: By modeling this behavior with the teams. Discussing and showing the importance of trust and mutual respect and reinforcing a high standard of practice within our team.

Cheryl Moore, Director, Stedman Hospice: There is no hierarchy in the team, everyone is equally as important.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: We build trust in relationships through lived experiences; it behooves us to see this as a long term investment. When we look at building trust and respect, and reliability, it’s the essence of this relationship, you do this and I do this, and you do this and I do this, and we learn that dance with one another over time.

Health Care Professional: In the palliative care team settings I have worked in, fostering trust and mutual respect has actually never been a problem because we’re not a team of strangers coming together to do palliative care, we work together every day. When you are trying to create the palliative care team, you are bringing together providers for a common purpose and building on relationships and trust that already exists. If you have a strong intact, collaborative group of care professionals working in a community, palliative care just enhances the working relationships that are already there.

Health Care Professional: We work to build very strong relationships with our long term care residents. Because of the work that we do, we need that trust and that respect; we need to show dignity to them, until the very end, because they deserve it. With our team, staff, and primary care it’s really important that we work together. We’re looking after the same people every day and we get to know one another very well, it is like family among the staff. When there are moments when one of the providers needs help, our team steps in. That kind of a relationship has helped us provide better care, not only for residents, but self-care, as well. We also have partnerships with community organizations that enable us to arrange palliative care education sessions to our front line workers. These opportunities help us to come together as a unit and realize our goal of providing a good death.

Health Care Professional: To build trust and mutual respect the team members must actually be physically together on occasion. One of the things that we’ve been able to do successfully in our region is organize cross-sector, interdisciplinary, regular patient rounds. Not just education rounds, but rounds that actually speak about individual patients and their needs. That has been a really important building block in terms of respect, communication, and the team members understanding each other’s roles, and to actually be together and talk about their mutual concerns.

Helen Pyle – Lead Physician Ian Anderson House, Oakville, ON: I offer to do consults with a family physician to help them to understand the patients’ needs and what services are available and how to access them. I also make myself available by phone for advice about medications, treatment options and pumps. Some family doctors will look after their own patients and do a great job. Some need a lot of help. Some have no interest in dealing with patients at end of life and will not provide the types of support that’s needed for such a high needs group. I would suggest to family doctors in our area that if they have a knowledgeable palliative nurse that they should consider listening to his/her recommendations. The nurses on our team who deal with pain and symptom management problems every day can often guide them through the forest. But we also have APN and a nurse consultant whom the family doctors can call for help in caring for their patient. I would encourage all family doctors to stay involved in some way, until the end. When they do, they find it very rewarding for themselves. From the team’s perspective, family doctors often have a wealth of information about the patient and the family which is invaluable.

Palliative Nurse Practitioner – Niagara North: I learned communication is the key. We fax our notes and orders. Family physicians see that the care provided by the team is very comprehensive and timely. I think there is a fear that, as the family physician, they will be left holding the bag should a patient get sick on the Friday afternoon of a long weekend. We maintain a shared care model. We anticipate and plan for potential outcomes/events and have tools in place at the bedside. We make good use of technology to stay in touch with the community nurses. We do what we say we are going to do.

Clinical Navigator – Niagara North: Physicians are very welcoming to have our team involved in the Palliative Care of their patients. They often will stop in, call or include a small note on the consent forms thanking the team.

Health Care Professional – Central LHIN: We have found that the family physicians who are involved have a strong interest in palliative care. We provide 24/7 support as well as information and education as they begin to work with the palliative population.

Cheryl Moore, Director, Stedman Hospice: Going back 18 years, one by one doctors we worked with saw how well the team worked and wanted to get involved in the community. Currently we use a shared care model from Mon-Fri 9-4 and then take over primary care for after hours and on weekends.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: Getting the physicians talking, and telling us what they need – or what they would like to see in a palliative care team. Allowing them that time and listening to their needs ensures that they have buy-in.

Health Care Professional: We started off with some areas with no palliative physicians and no family physicians providing palliative care. It has been a gradual evolution. With the community expert nursing team up and going, knowing that there is this 24/7 service in place has enticed some family physicians, particularly young physicians to the table and to remain involved with their patients, even after they have been identified as palliative. We also took the time to market the team heavily. We went out to different family practice groups and family health teams and provided presentations and offered our consultants to work collaboratively with them. There is still a lot of resistance but we’ve capitalized on the family physicians that have shown interest in trying to make referrals to them and also leveraged the support of palliative care physicians from other areas.

Health Care Professional: There are times I think that we take over care from a family physician, and that this is at a disadvantage to the patient who was comfortable with their family doctor. By taking over primary care patients think they are abandoning their family physician by having care being provided by the team. I am not sure if the family physicians don’t have the skills, or aren’t comfortable prescribing opioids, don’t do home visits or just assume that someone can do better by the patient, but they typically aren’t involved once we take over. We continue to provide fabulous care but there is a strain on resources because we just can’t face the growing population and growing needs in the community. Perhaps there needs to be a shift in thinking that the team is available for consultation and education and works as a collaborative part of the continuum of care and only takes over primary care in very special cases.

Health Care Professional – South East: Discuss the issues not the person. We all want to provide the gold standard care for the palliative patient and family. When things don’t work out we all want to learn from the experience.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: One primary focus of our team meetings is to continue to learn from difficult situations and mistakes. The patients and the families teach us all the time. Each of the team players brings a different perspective to the table. We share struggles and accolades.

Palliative Nurse Practitioner – Niagara North: We all own our own errors and look at things from a systems approach (i.e. – root cause analysis). This work is not easy and although we hold one another accountable there is no benefit to talking about whom is to blame for what. We look forward at what we can improve upon and how, and then we implement.

Clinical Navigator – Niagara North: As I mentioned earlier, we are a good team, when something does not work, we look for ways to make it work. We do a lot of brain storming and often come up with a solution quickly.

Health Care Professional – Central LHIN: I have not experienced this. Our partners and team are a caring, committed group of individuals. Any issues are worked through with open and honest communication. We keep the patient and family in mind as we problem solve and enhance services.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: Wendell Berry says “it is the impeded stream that sings” meaning that the rocks within the stream give the bubbling sound that we attribute to its function despite the fact that they may be seen as barriers. The barriers in our forward momentum [the rocks] are important and we acknowledge them as friction points and move together around them and they contribute to the ‘sound’ of good forward motion. To confront or abolish the barriers is the name/blame game and it doesn’t contribute to the stream of productivity at all.

Health Care Professional: Moving beyond shaming and blaming happens naturally if you have a strong palliative care team. In the settings where I work, the team has worked hard to create that common vision, to generate trust among one another and a real sense of shared responsibility for making the care as good as they possibly can. So when someone is struggling, for example, in their role or in their responsibilities, they can call on their colleagues, perhaps someone from another discipline, but the idea is that we are here together to do the best job that we can. And where there is shaming, blaming, and naming, I think that the cause of that is a lack of team work or a lack of shared vision.

Health Care Professional: Our team focused very heavily on avoiding the top down approach and to work very collaboratively with providers. When we run into situations, we problem solve together. We actually sit down with the individuals, look at the problem, review the rules, make it very clear that we trying to work collaboratively, not trying to take over jobs, etc. In all cases this has been extremely successful and we were glad we had those meetings because it actually improved care a lot.

Health Care Professional: It’s very important to have the basic premise that everybody is coming to the table to do the very best job they can. I think that once we start to believe that people’s intentions aren’t good, that’s when we start to erode the trust that is so important to creating the team based care that palliative care needs to be. We need to be open, able to come to the table, talk about our challenges without that sense of ‘I’m going to one up you. And I think another part of the problem is a territoriality that seems to come out. Control needs to remain with the patient and family to be successful and any attempts to try to undermine that philosophy can erode that collaborative feel. Every role within the team has to surround the patient and family and we have to let them help determine what the right direction for care is. It’s a very complicated health care world, but their needs are simple, so if we come to the table and say, ‘how are we going to make this work, how are we going to make this a good and worthwhile experience that the family is going to able to cope with’ then we have to come honestly, openly, and we can be innovative, and we can be flexible. I find that most problems come up when people get very rigid and fall back on bureaucratic processes and don’t question those. When we do bring it back to the patient’s and family’s needs, we all win because things are meant to be examined, and they’re meant to be made real and human.

Health Care Professional – South East: The community continues to support the program through donations to fund the program.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: We get a lot of positive feedback from families. I often meet patients who have sought out the team having heard about us from their friends or family. We have started to keep statistics for the last year to 18 months. We have been following where our patients die. If they die in hospital we record why they went to hospital. We have seen that fewer patients who are well supported by the team go to ER. Fewer patients die in hospital. I also believe that we have such a large regular turn out for our meetings because everyone on the team benefits from the resources, discussions, and support that we all give and receive back.

Palliative Nurse Practitioner – Niagara North: Patients want to die at home. Most of them are able to do that and die comfortably. We follow up with families afterward, they tell us that things went as well as could be expected. If not, we ask how things could have gone better and thank them for the opportunity to learn. The team members are happy! That bodes well for good patient care. I know from a study way back that perception of teamwork correlates with positive patient outcomes.

Clinical Navigator – Niagara North: Feedback from the family. When we hear that the family is happy with how their loved one died peacefully at home, without pain, with their loved ones around them, that tells us that we did what we set out to do.

Health Care Professional – Central LHIN: We have a caregiver satisfaction survey. We routinely receive complements from providers, patients and families as well as physicians. We also regularly seek out patient stories. Every education session includes an evaluation component which is reviewed.

Cheryl Moore, Director, Stedman Hospice: We just started to collect data. It started with 734 different concepts, but we’ve widdled it down to about 7. We use satisfaction surveys to family, caregivers and patients.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: We know were doing a good job with our team when we check with the people that we intend to serve. In the case of our team; a population based team, we serve primary care and the patients in the geography and the front line responders ask them if everything is going well for them. It’s as simple as asking.

Health Care Professional: In rural communities it’s quite interesting because palliative care teams are often looking after their neighbours or friends, rather than strangers, so the feedback loop is very strong. We quickly know via the grapevine if the care has not gone well or there has been a problem. Equally as important, the team gets the feedback and the sense of appreciation that families or patients feel for the quality care that they get because it is a very personal kind of relationship. So you know you’re doing a good job when your community tells you you’re doing a good job, and frankly it’s that feedback and that pride that sustains the team to carry on.

Health Care Professional: We know that teams are doing a good job based on some big aim measures such as reducing emergency visits or reducing ALC time in the hospital and so on. But we need to come together on some measures that are based on cost effectiveness but also on patient satisfaction, or more so, patient experience. We need to have a balance between quantitative and qualitative measure and bring these findings together in a more holistic way. We have done a lot of quantitative measuring, but we haven’t necessarily been really good at doing qualitative measurement. As a provider – we may think that lowering the cost is of really good value and a really good measure but it’s not necessarily translatable to what the patient and the families deem important for them. If we are truly a health care system that provides patient centered care, then we need to ask and engage the patients and their families to find out what is important to them. Based on that we should determine what we need to measure and track so that we can have a better idea if we’re making improvements and if we’re creating change.

Health Care Professional: We know we’re doing a good job because of the feedback that we get from not only families or residents, from our management, but from each other also and working together as a team. It is very important to have that feedback from one another. Sometimes when we’re having a bad day or a bad week or we’re about to lose one of our precious residents, we need feedback from each other and that’s when we really know that we’ve done a good job. It’s not the thank you in the newspaper, in the obituaries that we see, that’s always wonderful, but it’s always that feedback that we get from one another and the look on a residents face when they’re okay, when they’re happy and not afraid. Lots of times in long term care, you have your residents that have lost so much and they really need somebody to be understanding and caring and compassionate. When you achieve that level of care you can see it in their face, they are comfortable and you know you’ve done your job well.

Health Care Professional – South East: All consult nurses now have their certification. We make sure it’s a priority for them to keep updated with all the latest best practice guidelines in care. It’s a continuous strive to provide the patients with better service.

Helen Pyle – Lead Physician Ian Anderson House, Oakville, ON: We advocated for dedicated CCAC case managers to attend our meetings. We advocated for all the nursing agencies to mandate their palliative nurses to attend our meetings or bring reports from all their colleagues to our meetings. We encourage the nurses to bring up any concerns or questions about any aspect of the care of any patient on the team. We encourage any team member to bring any patient’s case to the team to be discussed once they have discussed the concept of the team with the patient and the patient has consented to be discussed. We have a set time and a central convenient location to make sure the meetings we host are as accessible as possible; we even get coffee donated. The only time when meetings are not held is over Christmas and New Year’s depending on what day of the week the holidays fall.

Palliative Nurse Practitioner – Niagara North: Use of technology is probably one of the best things. The bedside nurses know they can always get a hold of one of us. If we need help from the ER, we can call and tell them what is going on and get exactly what we need from them, and this enables us to continue facilitating care at home. We have access to clinical connect so we can see the hospital part of the patient journey.   I wish the hospital could see the CCAC notes on clinical connect so they have a better understanding of how to transition people from hospital to home without care gaps.

Clinical Navigator – Niagara North: Communicate! We talk to each other daily, sometimes even on weekends. We relay information to one another so that nothing falls through the cracks. We have a great system.

Health Care Professional – Central LHIN: We provide ongoing mentoring and support. We have an active journal club and interprofessional rounds and ongoing education sessions. We make sure there is 24/7 clinical nurse coordinator (CNC) support with management support of CNC staff. Collaborative working relationships with the inter-professional team including regular discussions with our medical director about best practice and challenging

Health Care Professional – South East: Don’t rush! Plan and develop your philosophy and criteria before accepting referrals. Identify the needs of the program, and don’t implement more than you can logically do. Be sure the program philosophy is well understood by administration and the staff. Educate the medical staff and hospital staff. First and foremost, be sure to train your volunteers. Cleary define roles of team members, and lastly, but most importantly, promote the service within your community.

Helen Pyle – Lead Physician Ian Anderson House, Oakville, ON: Start small and add people and resources as needed. We started at about 8 [health care providers] and we are now up to about 20.

Palliative Nurse Practitioner – Niagara North: Dr. Dooler [palliative care physician] and I were already active in this community, and knew the key stakeholders and players in both the hospital and the community. I don’t think we were ‘starting’ anything per se, just filling an identified and unmet need.

Clinical Navigator – Niagara North: Research, research, and more research!!! The more information you can gather the better prepared you will be.

Health Care Professional – Central: Complete a needs assessment. Begin with existing teams and experts. Develop a small team of interested and committed experts with a common goal and identify the critical roles and responsibilities of team members. Networking and profiling the program as it was developed was a key to our success.

Cheryl Moore, Director, Stedman Hospice: This was never a vision per say it really just happened. There was a desire to help patients with pain and symptom management after they were no longer cared for by oncologists.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: Is there a critical mass of people with some readiness for something that they can articulate and what have you already got? Community development, start with whatever you’ve got, start with a readiness point.

Russell Goldman – Director, The Temmy Latner Center for Palliative Care: Scale is most important. Limiting catchment in the beginning – maybe starting it as a pilot.

Health Care Provider – South East: Hospice without walls. Live until you die.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: Our team strives to provide the best support that we can to all patients whether they are at home, a retirement home or in our hospice. We strive to care for the patient as well as the family unit that is providing the 24 hour support in the home. We attempt to predict problems before they happen. We strive to prepare the patient as best we can physically and emotionally for their end of life.

Palliative Nurse Practitioner – Niagara North: The patient is in charge of their care, we are facilitators of their experience, their journey. No one should have unrelieved symptoms.

Clinical Navigator – Niagara North: The team works together to develop a plan of care and to provide services that will enhance the quality of life and provide support for the patient and their and family

Health Care Professional – Central LHIN: Experts in palliative pain and symptom management. We have a holistic vision of palliative care and best practice as identified in the Model to Guide Hospice Palliative Care. We work collaboratively with our community and LTCH partners in order to build capacity and knowledge in hospice palliative care. As our literature states, we see our team as: A Partnership for Caring.

 

Health Care Professional – South East: The program relied on existing RN’s with additional education when the program began. Over the years the program expanded as funds allowed. Different fundraising events were added by 3rd party participants and the program became less reliant on the foundation.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: We have no funding directly. Myself and Dr Benjamin donate about 2 hours every other Wednesday morning to chair our meetings. Over the years the three nursing agencies in our community have allowed their nurses to attend the meetings. That has been a struggle. But over time, I believe that it has become such a valuable resource for the nurses that their agencies have realized that the nurses have gained confidence and expertise from participating in the team. The Spiritual counselor initially was not funded, but she is now through CCAC.

Palliative Nurse Practitioner – Niagara North: The team was initially funded with new money. We are able to avoid unnecessary spending by improving communication and collaboration among the health care providers and putting the right work in the right hands, allowing people to die at home rather than in hospital, and see them at home if they get in crisis rather than having family call 911.

Health Care Professional – Central LHIN: We adopted an existing patient database. We are co located with the hospital and have access to their services such as human resources and payroll. Although we are a virtual team of community providers, we are hospital staff.

Cheryl Moore, Director, Stedman Hospice: Utilize volunteers, collect data to secure funding.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: Identify what’s already there, pooling resources and looking at collaborations, “using what you’ve got wisely”

Russell Goldman – Director, The Temmy Latner Center for Palliative Care: We were able to negotiate with the hospital that all funds that were donated by patients that were in the program or donations in dedication could be used directly by the program

Health Care Professional: In all the settings that I’ve worked in, including rural communities, first nation’s communities, and long term care, there has been no new money to develop palliative care teams. We did it by using existing resources, creatively and innovatively. One of the things that many of the teams worried about when they got started is that it would be a lot more work and it would take a lot more resources; that wasn’t our experience. The frontline general practitioners were doing the care anyway and once they were formalized within a palliative care team it made their care better and easier. They had the support of one another, they could more easily draw on one another’s strengths, and they could link to other disciplines, such as a physiotherapist or a social worker, to fill gaps in care.

Health Care Professional: Go back to working with the primary teams – ask why are the family physicians not engaged, why is it they’re not part of the team and recognized as part of the team? There’s often been an assumption over the years that family physicians are not interested in palliative care, they don’t have enough patients that die in a year to build that expertise. What we’ve done is gone back to those assumptions and challenged them: what can we do to change these things, what can we do to support the primary care providers? When we talk about teams, we automatically jump to the specialized palliative care team as opposed to the team being the primary level providers plus the specialized team, which can offer palliative care expertise. So being a full team that supports and utilizes primary care level providers, including homecare providers, physicians, and care coordinators, to their best capacity.

Health Care Professional: Getting very creative and thinking out of the box. To quote, “the truth you believe too often obstructs new vision.” Question everything you do with your resources. Is there a better way of using your resources? Maybe we need to consult with people throughout the whole organization on better ways of using the limited resources. We found that once you were able to do that creatively, you start to deal with resource issues.

Health Care Professional – South East: The program exceeds anything to date that the Province or LHIN have put into place

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: I believe that everyone benefits from the team. Our stats have shown that we have been able to keep more patients out of hospital to die at home or at hospice. Due to all the key players knowing each other and being comfortable to ask for help, patients have a more seamless flow in and out of hospital, back home or to hospice. I believe everyone on the team believes strongly that there is better communication between different providers which ultimately leads to better care. We have key players who donate their time and are committed. You just have to have a few patients where the value of the team is demonstrated and then nobody wants it disbanded.

Palliative Nurse Practitioner – Niagara North: I think this work is a priority as it is fiscally advantageous and is a consumer driven initiative.

Health Care Professional – Central LHIN: We are active participants in the development of the new regional hospice palliative care program. We support the Declaration of Partnerships. We support our community providers, the LHIN and the Long Term Care Homes to meet identified hospice palliative care education and pain and symptom management program needs. One of our key goals is to help avoid unnecessary ER visits and hospital admissions thereby supporting patients to die in their place of preference.

 

Health Care Professional – South East: The team works well because they follow the patient no matter where they are. They help the patient and family to navigate through a complex health care system. In the community, the consult nurses work very closely with the CCAC case manager and develop a trust in each other. They each have their roles and rely on each other. The program works well because it is housed in the hospital “the hub of healthcare”. This means the nurses need to know what’s happening in acute care, the palliative care unit and the community with the outreach team. This allows the patient to be exactly in the right place at the right time. Patients are maintained in the community until such time that it is not possible and then the patient can be directly admitted to the palliative care unit and bypass the emergency room.

Helen Pyle – Lead Physician, Ian Anderson House, Oakville, ON: Maybe we are just “Grandfathered”. In the past I have had to speak to the nursing agencies to ask them to allow the nurses to come. I have also had to call a high ranking person at the CCAC to request attendance of the home coordinators. I guess you need an advocate!

Palliative Nurse Practitioner – Niagara North: We use so many different charting systems and programs to keep everyone up to date and involved. We have reverted to printing our notes and making a paper chart in the office as a working tool so we all know who is doing what. Also, we fax our orders and notes to community providers and family doctors. It is a lot of work, but it works for us.

Clinical Navigator – Niagara North: It has certainly been a challenge working as a team and yet each working within different systems. This adds pressure to, and increases the workload of the Clinical Navigator who must ensure there is no miscommunication between the Physician and the nurses as well as the rest of the team. This means manually inputting information into three different systems, scanning notes from the Nurse Practitioner into OSCAR so that the Physician is able to read them. Then printing notes from OSCAR so that the Nurse Practitioner can read them. Finally, we make sure to input all that information into ‘Info Anywhere’ so that the Spiritual Clinician can have access as well. There are also three or four different documents to keep updated to record monthly statistical data. It is a lot of work, but we make it work!

Health Care Professional – Central LHIN: I’m not sure that the system is broken. We hear that we are making a difference every day by the individual client stories that we seek out. Our 24/7 availability and close working relationship with the palliative physicians in the community are an important part of our success.

Health Care Professional – South East: Start!!! Any form of palliative care that exceeds what is currently available can only improve the patient’s quality of life.

Helen Pyle – Lead Physician Ian Anderson House, Oakville, ON: In Palliative Care we are dealing with patients at their end of life. One day that will be a journey that each and every one of us will walk. Our goals of care are to make that journey as symptom free as we possibly can. We strive to provide a “safety net” of support around the patient and their family or caregivers so that they all know what may happen and how we will help them to deal with it. The network, the crisis management available from a team knowing what can be done and who to call to get it done is incredible. Don’t give up! It is so worth the aggravation! Stay committed.

Palliative Nurse Practitioner – Niagara North: Talk, talk and talk some more. Get boots on the ground and meet the others in the field. Make good notes, share them, and follow up when you say you will. Be clear to patients and families on who does what and when. Don’t dump issues, even if someone else dumped them on you, just get it done. Better to beg forgiveness than ask permission sometimes. Hear the message, not the words. Talk more.

Clinical Navigator – Niagara North: Communicate with each other. Document as much as possible. Don’t be afraid to ask questions.

Health Care Professional – Central LHIN: Collaboration and partnerships. Have a high standard of practice based on accepted best practice standards. Provide ongoing educational opportunities for the HPC Team in order to stay current.

Cheryl Moore, Director, Stedman Hospice: When starting a palliative care team you have to look at your own community and see who’s there and where the interest lies. Look into which physician(s) in your community is doing end-of-life, palliative care, and then how can you support that family physician trying to do this work so that there isn’t one person doing it alone. That is how our team evolved over the last18 years. Start somewhere, don’t wait until the pieces of the puzzle fit together – don’t be afraid. I think you start and learn from your mistakes and then change and adapt. I often say as I sit around some of these tables – while we’re trying to sort out best practice and understand what an interdisciplinary team should look like -start somewhere, because this person is dying NOW and they won’t be here tomorrow. This is where some of my frustration in this work bubbles up; if we wait until all the stars are aligned we will miss helping all those people who die while we wait around. Has it been perfect? No, probably some of my most difficult cases have been our greatest learning opportunities.

Denise Marshall – Chair of Ontario’s Collaborative Palliative Care Clinical Council: I think when starting a palliative care team it’s good to have an idea of what the community feels it needs. You need a team in response to what? My advice is that if that is not already outlined, the answer to that question could form into your vision Something that percolates up from the ground in the community that you’re going to serve My advice is to answer the following questions: What kind of palliative care team is the community wanting? What is the community in need of? What are the kinds of conditions in the community for a palliative care team? From your answers you can form your vision and a sense of readiness in the community for a team to exist.

Health Care Professional: Once you’ve looked at the resources that you have to work with and you have the vision of how you want to work, I think that you need to provide education for all for your team members within your own discipline and also as a group. Think about how you are going to provide care from an interdisciplinary shared team perspective, and once you’ve got that base, make sure you have some experts that you can call on if you have questions; people who have nursing, or medicine, or psychosocial expert skills. ‘Phone a friend’ is something we use and I think is important for primary care palliative care teams who don’t do this every day. Then you just start and you gain experience and confidence by doing the work and working through and solving the problems. Make a path with the help of team support and tapping into some external consultants you can call as you need, and by working very closely with community groups like hospice volunteers, church volunteers, and neighbors. You will quickly gain confidence that you can actually do this work very well.

Health Care Professional: Remind family physicians that it’s part of their role to take care of their patients and their families from cradle to grave. The family physician already has a relationship with the patient and their family, and really it’s about enabling the physician to continue to do this work and to connect them to other teams or experts, whether it is in tertiary or secondary settings. To have this communication so that the family physician can do the best job that they know how to do for their patients.

Health Care Professional: Just do it. Following a needs assessment, we began to hire staff quite quickly. I remember somebody saying to me, how do you do orientation when you haven’t got a program in place, and I still don’t know how we did it; but we did. We were very selective about the people we hired and very fortunate. There were people that had experience and were passionate about palliative care and it has just worked. It’s a gradual evolution, you can’t do it all at once, you have to be patient and learn from your mistakes. It’s very “two steps back and three forward”, hopefully in a way that improves the program. As we’ve run into barriers we problem solve and try to bring it back to the team meetings and go forward one by one.

Health Care Professional: Just start! Certainly when we put our teams together we did a lot of planning, a lot of preparation, but there comes a time when we just get going because you’re never really ready enough, and you never really have all the answers. Start and work things out as you can and learn from other regions. There are a lot of regions who have very successfully implemented these teams. Learn from them and then adapt as necessary.

Health Care Professional: I want to see a big improvement in Long Term Care. We have 46 long term care homes and I’d like to see a big improvement in attitude and a shift in the prospect of palliative. We understand that we see it as a broader concept and not just end-of-life care. I’d like to see better quality care provided across the community in long term care, in all sectors of health care. I’d like to see more hospices for sure.   I am going to be involved with my director in developing a residential hospice in our community and I think it’s an excellent option for many people. It’s important we focus our attention there.