Complexity arising from multiple needs
Professionals described many examples of challenging and unmet patient needs that spanned more than one dimension of palliative care – physical, psychological, social, spiritual, but it was the interaction between needs – either intrinsic (patient-specific factors) or extrinsic (factors related to the environment) that made them complex.
“I think you realize when you, really, when you’re looking at a patient and thinking there’s this and this and this, it is getting quite complex…” (Study AMU, Doctor).
“...the trickiest patients are patients who’ve got a real disease, and real problems that are causing symptoms but when their symptoms are...when there is a big psychological element to their symptoms. That’s when it becomes really tricky.” (Study SPC, Doctor).
Psychological, social or spiritual needs interacting with the physical was frequently highlighted.
“I think you could have somebody who’s referred to specialist palliative care with what seems like very complex pain, nausea, physical symptoms. And then when you actually spend some time assessing them and tease things out, you realize that psychological distress is playing a large part in that and if you can treat that then actually everything else becomes a little bit easier to manage.” (Study SPC, Doctor).
Social factors, such as difficult relationships and poor communication influenced patient complexity.
“when their relatives are in they’re often like arguing amongst themselves, like they don’t quite know how to express...the only way they can express themselves to each other is through anger...” (Study SPC, Nurse).
Complexity also arose from multiple needs within a specific domain. Patients with multiple physical symptoms, due to comorbidity or intensive therapeutic interventions, were described as complex.
“...often these people are on complicated regimens of medication so you’re having to balance the side-effects of the medication with the benefits” (Study PCT, Doctor).
Professionals in the AMU and PCT emphasized that a single challenging symptom, particularly uncontrolled pain or other intractable symptoms, could also create patient complexity.
“... you’ve worked your way up the ladder and they’re on an opiate...you’ve done all of what’s very sensible, but you’ve kind of got to the end of your pain ladder and they’re still in a lot of pain.” (Study AMU, Doctor).
Social factors also determined where a patient could be cared for. Professionals in the AMU considered patients to be complex if they could not be cared for at home.
“Families are just exhausted, and are at breaking point and aren’t really able to support the patient anymore.” (Study AMU, Nurse).
Specialist palliative care professionals described a holistic approach to the management of palliative patients. Spiritual needs were thought to increase perceived complexity, which was not evident in the interviews with non-specialists. For example, loss of autonomy and existential distress were common and thought to be well managed by SPC professionals.
“And sometimes, they’re getting close to that time so, and it gets them quite...because they feel they are still here so they have a lot of existential distress about why I’m still here, what is gonna happen, I outlived my prognosis.” (Study SPC, AHP).
This was not described by staff from the AMU.
“I think there’s probably a bit of onus on people to reflect on their own spiritual journey and needs....We don’t really ask any questions about any of that here.” (Study AMU, Doctor).
Introducing palliative care
The most appropriate time to introduce palliative care was a concern across all three healthcare settings, though professionals agreed - earlier was better. Patients with non-malignant disease were considered more complex given the uncertain disease trajectory and subsequent difficulty identifying when SPC would be appropriate.
“I’d hope that cardiology would be talking to Palliative Care if they had a patient getting towards end stage HF and having that discussion with the patient. But if they came to the hospital, that’s difficult though because of the kind of up-down nature of the disease. It’s difficult.” (Study AMU, Doctor).
Complexity arising from communication challenges
All health professionals wanted to prioritize patient preferences. However, PCT professionals described that not knowing when and how to have end of life conversations increased perceived patient complexity and management.
“the difficulty is knowing whether it is something that they will want to talk about or not, because you don’t want to be in that situation where you force them into that conversation that they’re not wanting to have and are not ready to have...” (Study PCT, Doctor).
Perceived complexity arose from patient’s and society’s reluctance to engage with the concept of death, dying and palliative care, which was particularly highlighted by professionals working in the community.
“Because we’re brought up, and brought through our careers that we’re going to make people better and we can’t always make things better” (Study PCT, Nurse).
Professionals also struggled to communicate with patients and families who did not want to discuss the future.
“‘let’s not talk about’ and then it’ll all go away’, which actually makes it much more difficult to see that good care can be given because good care requires good communication” (Study PCT, Doctor).
Poor communication within, and between specialties, and the multi-disciplinary team exacerbated perceived patient complexity as the quote to follow highlights – it was also a barrier to the identification and management of complex needs.
“One aspect that is difficult is communication. With medical and nursing staff, because things can change so quickly with patients and sometimes, you know you’re halfway through an assessment, the patient’s deteriorated and maybe someone doesnae tell you, or you’re getting different information from people. So that can be a bit frustrating.” (Study PCT, AHP).
Patients with additional communication needs, whether due to language, disability or cognitive impairment, were considered as having perceived complex need by many SPC professionals because it challenged holistic assessment, decision making and a deeper exploration of patients’ needs.
“Increasingly these days, we’re getting patients with Alzheimer’s and dementia. I find they are quite complex in that they’re very difficult to assess properly. And their...it’s difficult to assess their needs because they can’t tell you a lot of the time how they’re feeling and I think it’s difficult to know whether you are meeting their needs or not.” (Study SPC, Nurse).
Complexity arising from lack of confidence
Primary care and AMU staff identified themselves as palliative care “generalists.” Most felt they lacked confidence and the necessary skills to identify and care for patients at the end of life and used judgment and experience as a proxy. As a result, patients were often seemingly ‘complex’ because professionals felt ill equipped in providing palliative care. Professionals valued SPC support and advice to facilitate decision making and care. Staff in AMU felt they had adequate access to SPC support, as there was a Palliative Care team based at the hospital.
“I think I’d contact the palliative care team here to help decide when we need their help, I wouldn’t want to make that decision myself. I wouldn’t know how.” (Study AMU, Doctor).
“Complexities can arise for various reasons, whether that’s social, psychological, physical and I’m not sure there’s necessarily an algorithm for that. I think a lot of that comes down to judgment, really.” (Study AMU, Doctor).