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Skip to 0 minutes and 9 seconds Having looked to the need for integrated palliative care, there are some guidelines which we can use to help base our services on. These guidelines can be developed at a national or international level. A focus on care for both advanced cancer patients and patients with advanced chronic diseases, such as heart failure and Chronic Obstructive Pulmonary Disease, or COPD. As part of this research, the team looked at what guidelines were available through searching databases and looked at how good they were. The guidelines were quite varied but broadly covered when to refer a patient to a palliative care service, the kind of care someone might expect, and whether the palliative care team should provide direct care or simply offer advice.

Skip to 0 minutes and 57 seconds Here, Naouma, a researcher from the Belgian team, talks about how we assessed a range of European guidelines. In order to assess the quality of evidence that the guideline is based upon, we used a number of methods. Guidelines can be based upon evidence from published research, but also what we call consensus methods, where we get experts and sometimes patients to agree upon what the key guidelines should be for a given topic. If a guideline was only based purely upon evidence from research, it was rated as medium quality. However, if it was only based on consensus methods, it was judged as lower quality. If the guideline was based upon both consensus methods and research evidence, it was rated as high quality.

Skip to 1 minute and 45 seconds One of the key areas in using guidelines is to know when to start using them. Naouma discusses the difficulties in identifying when the right time might be. Looking first at the cancer guidelines, these included recommendations on when to introduce palliative care into cancer care, including introducing it earlier in the patient’s journey. However, 8% of the guidelines recommended that the referral criterion should be for terminally ill people but didn’t specify the exact timing. 4% of the guidelines used a surprise question to help identify those as being in the last year of life. The surprise question is sometimes used by doctors to identify whether someone is in the last 6 to 12 months of life.

Skip to 2 minutes and 35 seconds The doctor could ask themselves whether they’d be surprised if this patient would be dead within the next 6 to 12 months. This helps them to identify potential palliative care patients. But there are other ways to identify palliative care patients. The presence of metastatic disease may also influence someone’s prognosis and help doctors identify palliative care patients, which was also considered as a referral criterion in 15% of the studies. However, 13% of guidelines suggested referral to palliative care should be made at the point of diagnosis of cancer. One guideline recommended that the referral criteria should be determined through discussion with the patient and the family.

Skip to 3 minutes and 21 seconds It’s more problematic to assess the guidelines for non-cancer patients, including those with heart failure and COPD, or some people might know this as emphysema. Naouma discusses this here. Nearly half of the guidelines had some sort of referral criteria to palliative care. However, there was little agreement in what these referral criteria should be. Moreover, the appropriateness of many of these referral criteria was questionable, because they relied heavily on prognostication. Prognostication refers to the process of working out a patient’s prognosis. However, relying upon this has its problems. It is very difficult to judge the prognosis of palliative care patients and often requires an experienced doctor. In cancer, we are more accustomed to shorter deterioration in health before death.

Skip to 4 minutes and 17 seconds But in COPD and heart failure, patients often can become unwell and then recovery repeatedly over time, so trying to work out when they’re actually dying or having another relapse is hard. There is some guidance to help with this. We found a range of prognoses to determine when to apply palliative care guidelines. So it could be for patients in the last year of life, six months, or perhaps when they reached a certain stage of disease. The top five integrated palliative care guidelines in cancer were national guidelines from Spain, Hungary, Belgium, and two from the UK.

Skip to 5 minutes and 1 second The guideline from Spain that is promoted by the Ministry of Health and Consumer Affairs provides general information on how to apply palliative care in the clinical practice in both malignant and non-malignant disease. The guideline from Hungary is for terminally ill cancer patients in adult and paediatric hospice and palliative benefits. It was prepared by the Hungarian Hospice Palliative Care Association in partnership with the Nursing College Vocational Technical Dietetic College. The pathway from Belgium was developed through the collaboration of the Flemish government, the Flemish Palliative Care Federation, and the University of Antwerp. This pathway allows patients with limited life prognosis to have timely and accurate care by a professional in a multidisciplinary team.

Skip to 5 minutes and 57 seconds The first guideline from the UK identifies end-of-life care for patients and gives recommendations on how to provide a good quality of life until the time of death. Designed for both malignant and nonmalignant disease, it was a collaboration between the Royal College of General Practitioners and the Royal College of Nursing. This includes specialists and others from health and social care. The second guideline from the UK was developed by the National Institute of Health and Excellence, or NICE. It guides commissioners on how to provide a high standard of end-of-life care for adult patients suffering from both malignant non-malignant diseases. Naouma explains the criteria used to identify these top guidelines.

Skip to 6 minutes and 44 seconds The completeness of the integrated palliative care component of the guidelines was measured via the tool based on Emanuel’s IPC criteria. This is a template designed by the American Hospice Foundation Guidelines Committee to provide a practical approach for guideline writers and others to integrate PC into disease management and care services whenever it is relevant. A top guideline pathway was one that fulfilled at least 10 out of 11 Emanuel’s IPC criteria. It is important to note that the best of our knowledge– to the best of our knowledge, Emanuel’s criteria constitute the only tool that evaluates the content of the guidelines pathways regarding the level of palliative care integration.

Skip to 7 minutes and 35 seconds Consequently, even though this tool has not been in Berkeley validated, it has been chosen as the best choice. While we know there are limitations in this review, it does highlight a number of important findings. The first is prognostication, as already discussed. The second is around the need for a holistic assessment. This would mean a combined physical, psychological, sociological, and spiritual approach. When to ask for this assessment was also crucial. So the main recommendation for the timing of the assessment was early in the disease trajectory. Further, it was recommended that holistic assessment should occur at any time of day or night for physical and psychological support.

Skip to 8 minutes and 20 seconds Also, assessment should be responsive to changes in the disease or on the appearance of new symptoms, perhaps based upon some kind of outcome measure, like the distress thermometer. Goals of care are crucial in palliative care as a patient’s condition changes and they deteriorate. Other key areas would include assessment of patient goals, which would be based on the continuous communication between patient and the palliative care specialist to identify these goals. Palliative care specialists need to regularly consult the patient and adjust goals accordingly. Not surprisingly, the guidelines elaborate on the use of appropriate mitigation and strategies aimed at reducing both physical and psychological suffering. Adjustment of goals and planning for the future is sometimes called advance care planning.

Skip to 9 minutes and 17 seconds Advance care planning is where patients can make decisions about the kind of care they would like to receive in the future if they should lose capacity and were unable to make decisions for themselves. This was often a recommendation in the guidelines. Who gives this care, though, is also crucial. All of the guidelines strongly recommended the involvement or formation of a multidisciplinary palliative care team from the initiation point of palliative care, consisting of physicians, nurses, and other health professionals. Psychologists, mental health counsellors, social workers, spiritual counsellors. The multidisciplinary team can assist with the provision of holistic approach, identification of patient goals, assisting in the decision making, and ensure the continuation of care.

Skip to 10 minutes and 9 seconds How the team might help decision making in the last hours of life was also covered in the guidelines. These included identifying the dying phase, communicating with patients and their families, support based on patients’ and families’ needs and wishes and ongoing symptom control. Once the patient has died, then families and carers require support. The main proposed strategy would involve a commitment to immediate and ongoing bereavement support, including emotional and spiritual support appropriate to an individual family’s needs and preferences. It’s useful to have these guidelines, but the way they were assessed does not necessarily mean they result in the best ways of delivering integrated palliative care. One would hope that the guidelines would result in better care.

Skip to 11 minutes and 1 second There is no research to back this up. As stated earlier, some of the guidelines are more evidence-based than others, so this might suggest that they are more likely to impact on care.

Guidelines in Palliative Care

Having explored the need for integrated palliative care, we focus now on the guidelines which are available for the development of services.

Guidelines can be developed at a national or international level and focus on care for both advanced cancer patients and patients with advanced chronic diseases, such as heart failure and chronic obstructive pulmonary disease.

As part of the InSup-C project, a team of researchers looked at what guidelines were available throughout Europe and how good they were. In this video, Naouma Siouta, a researcher from Belgium, talks to Nancy and explains more.

Additional reading

For those of you who are interested, you can find some optional reading in the downloads section below.

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Palliative Care: Making it Work

Lancaster University