2.2 What are the principles of palliative care?

Dorothy Hardywood, Parkinson’s Specialist Nurse

This is quite a new concept in Parkinson’s that we actually look at palliative care within Parkinson’s. The principles of palliative care have long been established for cancer care, but we are now looking at how we apply these within Parkinson’s. Firstly, we have been talking about applying palliative care early in the disease trajectory, and in Parkinson’s management, we would actually know the client from early in their diagnosis, so we would support them through diagnosis, and the commencement of medication. Our input would then increase again, as their condition progresses, when they would be on a more complex regime of medication, or complex treatments, like Apomorphine, pump or Duodopa^® pump, or maybe have undergone deep brain stimulation. In the advance stage of Parkinson’s, we would have much more input because of the complex symptoms, their physical deterioration, and many hospital admissions, and also the stress that is on the carers, so as a Parkinson’s nurse especially, we are there to support the carer through this very stressful time.

Debbie Knight, Hospice Specialist Nurse

For patients who have received a cancer diagnosis, they can actually be referred for specialist palliative care at different trigger points throughout their disease trajectory: initially, at diagnosis, especially if they have been told that the treatment intent is palliative rather than curative. Secondly, where they have perhaps been having some palliative interventions, chemotherapy or radiotherapy, which hasn’t actually been effective and their disease has progressed. Thirdly, if they have had a recurrence of their cancer, or maybe further metastatic disease has occurred, and finally then, at the end of life, they would be referred to our service. At initial referral, an early intervention would involve for us very much focusing on complex symptom management, but also providing care and support to the family as well as the patient. Obviously, there is a difficult journey ahead for both of them, and while we can provide a lot of the support that they need, very often they need referral on to other services, especially where maybe more intense psychological, or emotional, or social, and spiritual support is required, so we would very often signpost them to the other services, other healthcare professionals, and maybe even other voluntary organisations who would be involved at that stage. And we just support them, I suppose, through their whole journey, right up until the end of life.

Dorothy Hardywood, Parkinson’s Specialist Nurse

In the management of Parkinson’s, we would usually adopt the holistic approach in that we are looking after their psychological, their physical, their social, and spiritual care. This would enhance the quality of life for that person with Parkinson’s, and also to those closest to them. When appropriate, we would think about advance care planning, because we feel that it gives the client the knowledge and the autonomy to make decisions about their future care, and to be in control of their care, which is very important to their management of, or acceptance, of their condition. We would also involve the multidisciplinary team, because they would be involved in the very complex and distressing symptoms which may occur at the end of life.

Debbie Knight, Hospice Specialist Nurse

Obviously, the whole aim of palliative care is to promote the best quality of care for patients for as long as possible, so while we can bring a lot to that, we also would rely very heavily on our multidisciplinary team as well, because we are meeting those holistic needs – not just the physical, but the psychological, social and emotional and spiritual needs of the patient. So from diagnosis, there is very much a multidisciplinary approach to care. We would very often be involved in advanced care planning discussions. In fact, those can take place sometimes at our very first consultation with patients, but we would be very much led by the patient themselves whether they want to actually go down that road and have those conversations. But there are other situations where we would feel that there is a more appropriate person to have those conversations and that may be their oncologist, their own GP, or some other healthcare professional who actually knows the patient better, and has a greater rapport with the patient, so we are very much led by the patient and the multidisciplinary team in that respect.

Dorothy Hardywood, Parkinson’s Specialist Nurse

The multidisciplinary team are usually involved from diagnosis of Parkinson’s but as the disease progresses, their input will change, and normally towards the end of life phase, their role will become more palliative and supportive. In the management of the clients through their trajectory, we would involve the family. They are very much involved in the discussions about the treatments, discussions about the progressions of the disease. It is very important to include the carers and to acknowledge their needs. We support them as best we can, so sometimes if we feel that our knowledge is inadequate, we refer them to other agencies which maybe could support them better through that journey. We are thinking about people like charitable organisations, other health professionals, or support groups.

Debbie Knight, Hospice Specialist Nurse

I suppose where I would see my role developing at this stage, I would use some of my advanced communication skills, and some of the principles of breaking bad news, to engage in those very difficult conversations with patients and their families. These sorts of conversations can include preferred place of care, preferred place of death, maybe discussions around resuscitation, whether they would want to be readmitted to hospital again or not, and just kind of planning for the end of life, what their wishes are, and having those conversations with their family. So, while we can begin some of those discussions and engage with those, we may also then, you know, again, involve other healthcare professionals. For example, we may initiate a discussion about resuscitation, but we would also want that followed up with their own GP, to kind of, you know, have that conversation as well, and make sure that is documented and communicated with the right healthcare professionals.