Issues Magazine

Pain and Palliative Care

By Jennifer Tieman (1) and Deb Rawlings (2)

Palliative care professionals have a unique role to play in the management of pain.

Pain can be a problem at any time throughout a person’s life. Imagine (or remember) the pain of a broken limb, an infected tooth, a protracted or difficult childbirth or of a chronic back condition. For many of us, pain is not something that we have to think about, or have to cope with, but for others it can be a big part of their lives.

Pain is a personal experience. We learn to use the word “pain” in our early formative years in relation to something that is unpleasant. This association has not only a physical meaning but an emotional one. For example, pain that is ongoing can be distressing or overwhelming, and it may impact on many aspects of someone’s life. This could include the way that they function physically or the way in which they manage their emotions.

When someone has an illness from which they won’t recover, pain can frequently be a problem. What we have come to know from the research evidence and from rigorous clinical testing is that this pain needs to be managed differently than that of chronic non-malignant pain such as osteoarthritis or pain that comes from an acute, recoverable event, such as having your tonsils out. Many of the same principles will apply within each discipline, and many of the same medications will be used, but approaches and philosophies will often differ.

Some medical specialists work in the field of acute and chronic pain. Palliative care specialists look at pain experienced by people with advanced cancer and those who are approaching the end of their life.

What Is Palliative Care?

When someone has an illness that cannot be cured and will progress to death, the focus of care changes to that of palliation, which means to ease the severity of a pain or a disease without removing the cause. Palliative care addresses any physical symptoms such as pain or nausea, as well as helping with any emotional, spiritual and social needs that a person may have as they near the end of their life. In effect, it helps people to maintain their quality of life.

Palliative care is helpful for many people, and can be given in the early phase of an illness when people are still undergoing treatment. Palliative care is not just applicable to those who have cancer, but can also help those with advanced non-curable neurological disease (e.g. Parkinson’s disease) or end-stage organ failure such as heart failure.

Palliative care is provided in almost all settings where health care is provided. The many healthcare professionals involved in caring for patients across their lifespan will often know of or be trained in a palliative approach, or have qualifications in palliative care. They will usually liaise with palliative care specialists in the pain and symptom management of those who have more complex symptoms or needs.

Palliative care will affect all of us at some point in our lives, whether as a parent, partner, friend, colleague, schoolmate or as a member of a sports team. Palliative care has received global recognition as a basic human right although in many underdeveloped countries it is not always available or resources, skills and knowledge are limited.

Pain Assessment

Pain is a frequent presenting symptom in palliative care, and pain that is not well controlled causes significant distress and disability. Without appropriate care it can prevent the patient from having the best quality of life. The effective management of pain is therefore a core element of clinical practice, although it is not always easy to achieve.

Pain is not always physical, and it is not hard to imagine that pain from the death of a loved one can be psychological or emotional. It has also been observed that those who are dying can sometimes suffer “spiritual pain”, which can happen if they have unresolved issues or ongoing inner conflict. These emotional issues can be experienced as physical symptoms such as pain. Pain is subjective: it is an intensely personal, individual experience and no one person can feel the pain that someone else is experiencing.

The complexity of a person’s “total pain” – physical, emotional, and/or spiritual – at the end of life cannot be underestimated, and unless all of these aspects are addressed, optimal pain management cannot be guaranteed. The importance of the assessment and management of pain has been recognised, including within the World Health Organization definition (“impeccable assessment and treatment of pain”) and the Palliative Care Australia Standards for providing quality palliative care for all Australians (2005), which highlight the importance of comprehensive, holistic initial and ongoing assessment and documentation of treatment decisions in care plans (Standard 3).

A comprehensive pain assessment will include regular assessments with a validated pain tool based on the person’s perception of their pain, its severity and whether it responds to treatment. This is an ongoing process that is embedded into palliative care practice, and includes questions around:

  • duration of the pain;
  • frequency of the pain – is it constant or intermittent?
  • nature of the pain – what does it feel like?
  • exacerbating and relieving factors – what makes it worse and what makes it better?
  • location of the pain –where is it, and is there only one pain?

There are often situations where pain assessment is not as straightforward as asking someone questions about their pain.

Small children are often not able to use assessment tools such as a rating scale: “Tell me on a scale of 1 to 10 how bad your pain is, with 10 being the worst possible pain that you can imagine”.

To help in getting children’s pain under control, faces scales are used for the measurement of pain intensity. These are validated tools (meaning they have been tried and tested in practice) and have a range of faces that may look similar to this:

Range of faces

Children can then choose which face matches the way they are feeling about their pain.

People who suffer from severe dementia may no longer be able to communicate as they once did. Even in advanced dementia, a person will still feel pain but may not recognise it or be able to respond in a normal manner. However, their behaviour or mood may change, for example grimacing, aggression, agitation and withdrawal.

Palliative care professionals have considerable expertise in the field of pain management and assessment, and their knowledge and skills are widely applied.

Patients and Carers

Many people with a terminal illness will continue to be cared for in the community, in their own home, in an aged care facility or living with family and friends. Patients, carers and families need to be supported to ensure that symptoms such as pain can be successfully managed in these settings. There is an increasing body of research looking at strategies such as carer pain education modules and resources such as pain diaries to help patients and their families in the community setting.

Medications in Palliative Care Pain Management

Over many years, different medications have been used to achieve relief for those who are in pain. Palliative medicine specialists have looked at how drugs and medications affect pain (applied pharmacology). Much of this prescribing evolved in response to challenges in specific care. Large-scale drug trials for palliative care have been hampered by a lack of trial infrastructure, concerns around patient burden at the end of life, and a lack of financial return for drug companies. This has meant that prescribing approaches have often been consensus-based, without a rigorous experimental database. Recent initiatives are starting to redress this situation.

In Australia, the establishment of the Palliative Care Clinical Studies Collaborative has provided an infrastructure to conduct clinical trials in palliative care. The collaborative consists of organisations that are involved in multisite phase 3 and 4 clinical medication studies. Their aim is to support access to appropriate medicines to help maintain comfort and function during the terminal phase of a person’s life.

The European Association of Palliative Care has also supported the EPCRC Opioid Guidelines Group, which has completed a comprehensive set of systematic reviews examining the nature of the scientific evidence on the use of opioid analgesics for cancer pain. However, the evidence supporting the use of medications in palliative care is difficult to find, and important areas of research still remain.

Enhancing Knowledge Use

As the evidence base for pain assessment and pain management expands, it is important that this evidence is made available to the palliative care community, both health providers and those with palliative care information needs. The Department of Health and Ageing has funded the CareSearch website (www.caresearch.com.au) to consolidate the evidence base and to help consumers and clinicians find trustworthy and quality information. This includes clinical practice pages on pain for health professionals, and information and resources for patients and their carers, family and friends.