Becky, Palliative Care PA
Becky is a PA who trained in Chicago and graduated from a PA program in the United States. She has practiced as a PA in Owen Sound, Ontario, then Brampton, Ontario.
In Owen Sound, she focused on active and curative intent oncology patients as well as palliative patients. When she moved to the Brampton Clinic, she focused on Palliative patients. These were mostly oncology patients, but also encompassed everyone in the Palliative Care umbrella. This included End Stage Kidney Disease, End Stage Heart Disease, and End Stage Liver Disease, etc.
What is Palliative Care?
Palliative Care is an Umbrella term, and the term comes with a lot of controversy. A lot of people wish to change the term because people have a negative connotation with the word Palliative. It means ‘anyone that has a life ending’ illness. It does not have to mean immediately life ending, but it means non-curative.
Then we might talk about more specific genres within Palliative Care, for example Hospice and End of Life Care would be in the last 3 months of life.
Palliative Care might encompass those who have many years left or those still on active treatment.
Why patients should be referred to Palliative Care Sooner
Most people wish we could see Palliative patients earlier because most of the time they are referred to a palliative team really towards the end stages of life in the last 3-6 months or in the last year or so.
Most people are diagnosed with a life-limiting or life-ending diagnoses years before. For example, Alzheimer’s Disease and Dementia typically take many years before it ends someone’s life. Same with Heart Disease or Liver Disease – these tend to take many years.
Studies repeatedly show those who are referred to a Palliative Care team tend to live longer and have better quality of life, so we really wish patients were referred sooner rather than waiting until the end and playing catch up.
If we are seeing them sooner, we are doing more emotional support. We can address their symptoms and concerns. It does not, by any means, signify that we are not doing active treatment. They continue seeing their cardiologist, nephrologist, or endocrinologist, they continue with their active treatment.
So if someone is doing very well with a good performance status, they would be seen in a clinic setting. Someone can be seen in their home, in a hospice unit, a residential unit, or in a long-term care facility depending on their needs.
Who is in the Palliative Care Team?
It’s generally a team of people. There’s a physician, NP/PA, nursing staff, nursing support staff, as well as social work, physiotherapy, occupational therapy – the list is broad as to who should be on that team to provide that support.
Choosing Palliative Care
I fell into this PA role accidentally. When I got my job in Owen Sound, I didn’t know I had an interest in Palliative Care. I did this because I enjoyed Oncology and also needed a job. Those things were right up my alley. Throughout my time, I was exposed to palliative patients, enjoyed my time with patients, and felt blessed to spend my time with.
I took a job in Brampton to focus only on the Palliative side since I had such an interest in that. When I took the Brampton Job, I didn’t realize it was going to be Palliative Care. I took the job through a Family Practice and the idea was that I would have some palliative patients, but I would also have to see regular clinic patients in the family practice.
After a couple of months, through discussions with the physicians, it became clear that there were plenty of palliative patients that needed my time and I had a definite skill in that area. I didn’t see the regular family clinic patients at all.
My Clinical Role
You have to deal with the paperwork side.
DNR status paperwork – A DNR status is NOT required to receive palliative care. DNR is 100% optional based on the patient’s wishes. They do require DNR status to be seen in a residential hospice setting, or they may choose to be with a code in any other setting.
Medical Directive Paperwork – If there is no social worker on the team you would have to other general medical directive paperwork. What their end of life wishes would be. I like to get more detailed with this. This is not just discussing “life support” in the DNR status, but do you want antibiotics (those are potentially lifesaving) but don’t help prolong your life in the grand scheme of things (i.e. prolong your life in a few days or few weeks). And they don’t help with symptom management in the last stages of life.
Paperwork around Nutritional Status & IV Fluids – We also talk about IV fluids, if that’s something they want or not. We have a discussion about the nutritional status of that patient. Specifically with GI cancer, pancreatic Cancer, those patients have nutritional status issues that can make the family concerned. We want to have those discussions.
Admissions Paperwork – We would take care of Admission Paperwork, either to the hospital, hospice, residential hospice, and long-term care facilities.
We visit patients regularly and take care of their visits, this might be daily in the last stages, and do their whole physical exam, symptom management. If need be, you would be responsible for blood draws.
Procedures that are useful are bedside paracentesis – is you have this skill level the patient doesn’t have to go to a facility to have that done, as well as IV starts, familiarity with G and J tubes ect.
What should patients expect when seeing a PA?
The patient should be expecting to see someone very empathetic, a very good listener. If you look at the day to day clinical duties / physical examination this wouldn’t be any different than a PA in any other specialty.
A Palliative Care PA can really sit down, and listen. This is a key tool- to listen to patients, listen to the family. Sometimes all they need is someone they can sit with for one hour, hear their concerns and either validate those concerns and explain how we can alleviate it.
How do you interact with patient’s family?
The family is very involved in palliative care, and if they’re not involved, it is a little bit sad. But typically they’re very involved. There’s often family meetings that are scheduled, and we do that in advance so that family that is working or out of town are able to come to those meetings and have their questions and concerns addressed.
Patients are very concerned about how their family is handling the diagnosis, often more so than how they’re doing themselves. We also have to address that as well.
In that, we also have to ensure we are respecting the patient’s privacy, autonomy, and wishes of what they want shared and not shared.
Conditions Encountered in Palliative Care
Any advanced cancer diagnosis
Dementia patients are very commonly seen
Dementia is hard as it takes a number of years to actually end somebody’s life, which can be a challenge in itself. No family member wants to say “I wish X’s life was shorter”, but I know some patients wants to say that. Living with that continual deterioration is very difficult. We have to ensure we have extra supports in order to manage that.
Having someone bed-bound for 10 years can be very challenging. It is also difficult to assess when a dementia patient is near their last weeks to months of life, because that illness has a slow course. They often get worse, then they stay in that spot and don’t continue to deteriorate.
End stage heart disease
End Stage kidney disease
End stage liver disease
And of course kidney and liver goes together, when you see a patient with End Stage Liver Disease they usually have advanced kidney disease as well and visa versa.
ALS
Not as common. The neurologic diagnosis would end someone’s life. I did not have any ALS patients.
I did not see young patients either, as those are more unique situations.
Benefits of Palliative Care
It’s one of the best area to work. Not only do you feel you are making a difference on a day to day basis, because you are really impacting the patient’s quality of life – but they are also grateful as well as the family members.
I felt so welcomed into people’s homes, and vulnerable moments of life, whenever I worked covering a family practice or an urgent care you don’t often get that kind of reward. Often times people are walking away angry from you because you are not giving them the pain pills or antibiotics they came in wanting.
In this setting, everyone is grateful, despite the difficult time they are going through and the many emotions they are experiencing. It is a very rewarding practice.
Challenges of Palliative Care
Palliative care is emotionally trying. You have to be the kind of person who can manage those emotions. Its not that you shouldn’t feel the emotions. Its okay to feel sad. You have to ensure that it does not take over your life.
Managing your emotions is a skill, and its not a skill that you are necessarily born with, a lot of people can learn it. Its something to be cognizant of and it can be draining. You want to go home at the end of the day and replenish yourself and come back the next day fully charged from that.
And I don’t think it goes away, you have to continually check on yourself and continue to monitor. There are programs to help any clinician in a Palliative Care setting to help them deal with emotions, manage death, and continue on with life.
Death is a part of life we are all going to experience, its inevitable and its part of a normal cycle. We go into a health care field with the goal of fixing people. If you can’t “fix” the original problem, that can be a challenge. We have to look at death differently, we have to look at hope. Not necessarily hope of a cure, but there can be hope of reconciling differences in family members, reconciling faith, and unsolved emotional issues for many years of their life and the family members involved.
You can hope not to have pain, hope to die calmly and hope to pass peacefully. There’s so many parts of hope that can be established and supported in the Palliative Setting, not just a hope for a cure which is how its often defined.
You do have to continually check in with yourself. Some patients are going to affect you more intensely than others.
Day in the Life of a Palliative Care PA
Most of my patients I would not see in clinic because most of them were too ill for that. Most of them I would travel around to patient’s homes, as well as to residential hospice. I didn’t have authority in hospital, that was a different battle. I would see roughly 10 patients per day, and leave 1-2 spots open for an Emergency/Urgent visit.
10 does not sound like many patients. However, I would like to have as much time allotted to the patient as they need. Sometimes it’s a quick visit, and sometimes it is 1.5 hours, and I did my very best. I did my very best to ensure that patients received the full capacity of care that day, which sometimes includes just listening.
There is also travel between homes and between sites. You also need to accommodate for that travel as well.
I schedule them for myself, as I did not use the front desk staff – as it ended up being too complicated. I needed to schedule them based on urgency, physical location because I did not want to be back tracking in travels throughout the day. I would rather they go progressively in one direction. I would schedule one closest to my house or the clinic, and move out from there. I would typically allot 1 hour per patient.
You go, assess them – assessing pain scale, performance status, nutritional status, adjusting bowel habits as well so that is not causing a comfort issue, or other symptoms they are experiencing. You are checking for bedsores as they are often pretty non-mobile. I would do an exam, and order any blood work if need be. Although, I am very conservative with blood work. If we do not need to be ordering blood work I am not going to blood work, and if it is not changing someone’s position or course of management, then I am not going to be checking on someone’s Creatinine Level with end stage renal failure. I know what the answer is going to be, its not going to be good, and I’m not going to change any treatment based off of that. I would not order routine kidney levels, unless they are on dialysis.
Same with electrolytes, I would stay away from electrolytes unless we knew that was something we would treat.
What I would not be so conservative on, would be anything that would keep them comfortable. For instance if a paracentesis would keep them comfortable, I would get that ordered, and get that patient scheduled.
If they needed more frequent visits from CCAC or whatever home care service they use, I would help the nursing facilities coming in and doing their visits.
What are the benefits of receiving care at home instead of in a facility?
First of all, this is what patients want. Patients have been routinely surveyed in Ontario and throughout Canada and consistently the vast majority of people wish to spend their last days at home.
They’re more likely to be comfortable there, and they are already not comfortable. They have a life-altering or life-ending illness. They already have the symptoms that go along with that, and we try to alleviate everything we can. One thing is location.
Everyone is allowed the right to receive care towards the end of their life at home in Canada. However the logistics of it gets complicated. For instance, funding for CCAC and home care is different. Some areas within the province can receive nursing visits for changing diapers, changing their position, administering medications – whatever that may be. Whereas in other areas they may be coming for visits once or twice per week. You have to have family around or the finances to supplement that.
Everyone has the right to die a home, but not everyone has the logistical ability to make that happen. It does happen more frequently if you have palliative team on board, because we have access to the resources and can connect patients and families to that. We can really help support them and also we do home visits.
Hospitals should not be where patients go to die. Hospitals are where people should go to get better and acute treatment for whatever that issue may be. You get in and you get out. This is not for any specific area of medicine, this is across the board. Whether you have a baby, sepsis, or pneumonia. You get in for the acute issue and then get out.
Hospitals are more likely to cause infection, they are very loud, and this is not an avoidable issue in the hospital setting. Patients at the end of life need peace and quiet. We’ve researched this, and we’ve looked at brain waves, even when patients cannot verbally communicate. They respond better when we have calm, quiet environments. The hospital isn’t really able to provide that. Buzzers are going off, announcements are going off in the overhead, things are beeping. It’s also more likely patients are going to have interventions if they are in hospital, so blood work. Blood work you think about it but you think its not a big deal. But if you are in your last days of life and all you want is peace and quiet, you need things to be calm in order for your soul to be calm in this process, and your system is acutely more sensitive to its surroundings than it may otherwise be. If you have someone bugging you at 5 am in the morning to draw your blood, or whatever that may be, it’s not really conducive to a comfortable last few days.
There are hospitals that do have ‘hospice settings’ because there are areas that do not have residential hospices. So what they do is they often convert one area or one room of the hospital for this service. It is sometimes needed and unavoidable, for those whose symptoms cannot be treated at home for whatever reason that may be. They do their very best to make it as comfortable as possible. These palliative hospital rooms are typically smaller, there’s not always a lot of space for family, and it’s not the best for all of these reasons but is sometimes necessary.
Defining Hospice
Hospice would mean your last few weeks to months of life, receiving care at that time.
Residential Hospice is a physical facility that you would go to during that time of life.
They’re really nice facilities, if its not possible to pass away at home. It’s covered, completely paid for by the government. You get a large room, usually these rooms have a pull out couch so family members can sleep on them, very large bathroom. Some type of garden area to help facilitate this peaceful, quiet, beautiful and serene space to be in. They usually have kids room or area so that kids that need to play have the space to.
They often have food for family members, and not just for patients. Patients are often not eating at that time of life anyway, but family members certainly are. They often and usually do have a volunteer staff to cook food for patient’s families to ensure they’re comfortable.
There’s often showers, and other types of facilities so family members that are there for a long time have a place to clean up and be comfortable themselves. They are really nice and very accommodating. The trouble with them, is that the bed space is limited. Because the rooms are so large, they can’t accommodate the numbers a hospital can.
For instance, the hospice in Brampton that I worked at had 10 beds. There’s not a lot of space there for patients who may want to get in. You would be put on the waiting list, and maybe there’s time for you to wait and maybe there’s not before a spots open.
They’re really beautiful places and I haven’t had a single complaint. The only hard thing I ran into, other than bed availability, was language barriers and cultural barriers.
They did their very best to accommodate all those things, they couldn’t guarantee a nurse would be on staff at that moment overnight or whatever time of day that spoke the same language as the patient. That was the only issue and it certainly was not something the hospice was not aware of. They were very aware of it, and were trying to find ways to overcome it, as it is something important to deal with.
Impact of Adding a PA to a Palliative Care Team
It helped provide 24 hour on-call care. I split the call between my supervising physician, 50% of the time I was on call and 50% of the time he was on call. Of course anytime I was on call, he had to be on back-up call. The reality is that PAs are very capable of managing the vast majority of issues that come through especially if you plan well. I think maybe once there was a time that I had been on call where I had to call him, but that was it.
We were able to provide a 24 hour service to our palliative patients. Really if you’re going to provide good quality palliative care, you need to have 24 hour access.
And we were also able to visit patients more regularly. They had very quick access, and if they called that day for an issue they received care that same day, and we resolved whatever issue they were having that same day – and that was not happening prior to me being there.
I think that was the biggest thing, the amount of access that they received is the biggest difference that patients have.
The other thing, a lot of family physicians are not doing a palliative care service. The fact that I was there, I created the palliative care service while I was there. That was 100% created by me, supported by my supervising physician. It did not exist before me.
Not enough palliative care teams in the GTA, there is a study that came out approximately 6 months ago citing the number of patients that should receive palliative care, wanted palliative care but did not receive it before they died – and it was a fairly high number (perhaps 40% of patients).
PAs seem like an untapped resource for GPs expanding their care to palliative care. Do you see this as an area of growth for PAs?
Obviously yes. Its not an area that receives a lot of focus in many areas of our conventions and discussions in school etc. but is an area that really needs it.
The same with NPs. NPs are more commonly found in palliative care than PAs – but they’ve just been around longer. There’s not really a reason they have to be more in that market than we do, I think in fact, in might even be the other way around because physicians in palliative care often want to have a relationship with the patients even though they don’t have the time to be there with every single patient in the same manner. Because PAs are more physician extenders, rather than NPs being a bit more independent, we tend to have a more closer relationship.
I’ll say that with a caveat, I really think NPs and PAs can function equally successfully in this role, and that both of our professions should be more involved in palliative care in providing that service.
If there is ever a time in life, that you deserve the best care, it is during your end of days.
Everybody deserves to die peacefully, quietly and not in pain. Right now in Canada, that is not happening. I will say that Canada is one of the forerunners, we are leader in palliative care in the world on a global setting, but we’re not there. We still have a long ways to go
If a Physician or LHIN were interested in incorporating onto a Palliative Care Service or things they should look into?
LHINs are already hiring PAs, it is recognizing that palliative care needs PAs and devoting money towards it. You go about hiring just as you would any other practice. The key would be to fit in any other practice, the key would be to find the person who is the right fit for that role.
The medical piece of palliative care is not complicated. There are common things that you see again and again, and anybody can learn that. The hard piece, which I alluded to earlier, is the emotional piece that comes along with palliative care.
You just have to find the right fit in terms of the PA hiring for that. But otherwise, I think you would hire them in any other fashion that you would.
The first step is recognizing that it’s a need. Private physicians practices, LHINs, I don’t think recognize that this is a need or a service that PAs can fulfill. That falls to us to be networking and advocating.
Tips for PAs/PA students interested in Palliative Care
Learn the medical piece of palliative care. You can learn it on the job. Everybody that graduated from a PA program and passed the exam is very capable of learning the medicine involved in Palliative Care and how to manage those symptoms.
What the harder piece is to do is to work on listening skills. It’s something I have to work on myself, and I am always checking in on myself on the emotional side of things. Anyone looking to go into this role has to go in with the understanding that the piece they have to work even if they are really good at it right now, at some point they will finally need to check in with themselves whether that’s taking some time off, making sure they involve themselves in their hobbies, meditating, walking meditation or just self-awareness works well for me. That’s how I use it. I also use my faith and if you’re not a faith-based person you can still work in palliative care. You do have to have some way of mitigating spiritual self as well as your emotional self throughout that process which anyone can do. You just have to be aware of it going in.
And also be aware of the lack of understanding in other colleagues about palliative care and end of life goals – and how we can stay calm throughout the process and not take that to heart or take it home as being your fault. I have really struggled with that.
But many people are capable of overcoming that and moving forward. I think the palliative care clinicians as a whole are making progress. I do think most Canadian clinicians are at least aware of what that it is, and acknowledge the autonomy that comes along with that.
We’ve had so much news coverage of Medical Assistance in Dying (MAID) happening, I think more people are more aware of that. MAID was legalized in 2016. PAs cannot carry that out. NPs can and so can physicians. Most practitioners do support MAID in choosing to die on your own terms. There’s still a lot of complexities with that and things that need to be worked out. But I do think that its still covered in news stories across the country has made clinicians on the whole more aware and at least thinking about that a little bit more.
Resources for Palliative Care
Physicians in Palliative Care group, and they’re a national Canadian group. They are led a partially family physicians, and specialized palliative care physicians. They do research throughout Canada on palliative care, with a goal of connecting to government, hospital and clinic setting. You can see research and recommendations they are making. They put out guidelines as well.
Final Notes
Even if you don’t go into Palliative Care, everyone has palliative patients in their practice. In Orthopaedic Practice, you may not be seeing Palliative Patients long term, but most people in family practice or a general practice, internal medicine, Oncology, Neurology, Cardiology – all of these practices have patients that are palliative. You can incorporate ideas of Palliative Care and into your practice daily. The biggest thing would be listening to patients, making them aware of their choices, and supporting those choices.
