Delivering patient-centred palliative care services

“Palliative care is sometimes described as a new specialty. In fact, it is probably the oldest of all medical specialties. This anonymous 16th-century writing summarises much of the palliative care experience: To cure, occasionally; to relieve, often; to comfort, always!

In essence, palliative care is primarily concerned with quality of life; it is dedicated to a form of active treatment that is designed to ensure that patients are enabled and encouraged to live their lives to the greatest possible extent, in the manner and in the setting of their choice.”

 Dr Tony O’Brien, Chairman’s Preface, Report of the National Advisory Committee on Palliative Care, 2001

Introduction

Almost 30,000 people die annually in Ireland and over 6,000 people use hospice services every year.¹ Recent decades have witnessed a remarkable advancement in our understanding of the needs of patients in the final stages of life. The pioneering work of Dame Cicely Saunders and St Christopher’s Hospice from the 1960s was, as in other countries, a key factor in the modern hospice movement. In Ireland, palliative medicine became a recognised speciality in June 1995.²

In an Economist Intelligence Unit white paper on The Quality of Death: Ranking end-of-life care across the world (2010), Ireland was placed fourth after the UK (first), Australia (second) and New Zealand (third). This quality-of-death index ranked countries according to their provision of end-of-life care, across categories of basic end-of-life healthcare environment, and availability, cost and quality of end-of-life care.³ An earlier study of palliative care in the European Union placed Ireland second out of 27 countries for vitality and resources for palliative care development.⁴

Ensuring relief of suffering at end-of-life

The WHO defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.⁵

Publications by Dame Cicely Saunders in the early 1960s outline the first two clear principles of “orientation to the prevention rather than alleviation of pain,” together with a “comprehensive understanding of available analgesia” and a hardheaded approach to pain management – “constant pain needs constant control”.

Saunders’ concept of ‘total pain’, including physical symptoms, mental distress, social problems and emotional difficulties, contributed to understanding the components of patients’ suffering associated with pain and death.⁶ Relief of suffering is at the heart of the philosophy, science and practice of palliative medicine. Quality of life is threatened in patients with advanced and/or terminal cancer, who frequently have to endure severe pain, along with a myriad of disease and unpleasant treatment-associated symptoms and side-effects.

The ability to recognise suffering, and to formulate an appropriate response to alleviate this, is a fundamental goal of palliative medicine. Persistent suffering undermines the value of life to the sufferer if they perceive the situation is without hope, increasing the likelihood of their looking to suicide, assisted suicide or euthanasia as a way out.⁷ Suffering is defined as “an aversive experience characterised by the perception of personal distress that is generated by adverse factors that undermine quality of life”.⁸ There is a fundamental duty of care, based on ethics and human rights, in palliative medicine “which asserts boldly and optimistically that even in the face of overwhelming illness, suffering can and must be relieved”.⁹

Increasingly, there is a human rights focus on pain treatment with international human rights law obliging countries to provide pain treatment medications. Failure to take reasonable steps to ensure that people who suffer pain have access to adequate pain treatment may result in the violation of the obligation to protect against cruel, inhuman and degrading treatment.^10,11

The International Psycho-oncology Society (IPOS) has set up a Human Rights Task Force, and the International Association for the Study of Pain (IASP) has developed a highly enlightening film with accompanying videos called Life before Death, currently on release at international venues.

In 1995, Pope John Paul II wrote in the Evangelium Vitae: “It is licit to relieve pain by narcotics even when the result is decreased consciousness and a shortening of life, if no other means exist.”¹²

Morphine is the gold standard for pain relief in cancer care and the Morphine Manifesto is the call for affordable access to immediate-release oral morphine, which is “both safe and effective as first-line treatment for severe pain”.¹³

Effective end-of-life care depends on adequately meeting the patient’s needs based on biopsychosocial assessment. The principles of pain and distress assessment, treatment and management have been addressed in the summer and autumn 2011 issues of Cancer Professional.^14,15

The experience of severe pain at the end-of-life is estimated to be about 25% in patients with cancer, with about 50% of terminally ill patients experiencing moderate-to-severe pain.¹⁶ The high prevalence of pain in patients with advanced cancer at end-of-life requires healthcare professionals to have detailed knowledge of cancer pain syndromes, which are, primarily, pain due to underlying disease, related to treatment or unrelated to disease or treatment.¹⁷ Competency in assessment and documentation of pain and distress and administration of pharmacotherapies is therefore essential. 

In Ireland, oral, sublingual, buccal, transdermal and parenteral routes are the most frequently used routes for opioid and adjuvant medications in cancer care. The pharmacy at Our Lady’s Hospice Harold’s Cross now runs a palliative medicines information telephone advisory service for healthcare professionals.¹⁸   

Complex physiological mechanisms in pain in advanced cancer

Major advances have been made in recent years in understanding the very complex physiological mechanisms involved in pain in advanced cancer. The nervous system pathways involved in pain perception possess a capacity for plasticity. The substrates of clinically salient pain undergo neurophysiological and pharmacological changes, with tumour-related pain signals elicited at the periphery undergoing complex adaptations as pain signals travel through nerve pathways to the brain via the spinal cord, leading to abnormal hypersensitised function in nerve pathways.

The subjective pain experience of the person with cancer is comprised of physical sensations and affective functions as a consequence of this process, as well as additional resulting complexity in dynamic neural links in the brain. The patient’s reported increased subjective pain experience does not always match the extent of the peripheral damage.¹⁹

Aetiology of pain in palliative care is through tissue and/or nerve destruction as a result of tumour burden, treatment side-effects such as chemotherapy-induced neuropathic pain, and metastases, particularly bone metastases, which are the most common cause of cancer pain with a prevalence of about 64-80% in these patients.¹⁹ Cancer-induced bone pain is now recognised to have extremely complex peripheral and central mechanisms, probably comprising both inflammatory and neuropathic elements, superimposed on cancer-related structural bone and nerve damage, with implications for appropriate and effective pharmacological interventions. 

Clinical evidence shows opioids to be effective in reducing pain-like behaviours in animal models. However, for patients with advanced cancer, escalation to high doses of opioids alone may result in severe side-effects of nausea, vomiting and constipation, as well as sedation and delirium, and may not produce the required effective analgesic outcome. 

Skilled combination pharmacotherapy is required to address both the blocking of sensory inputs achieved with morphine and the use of an anticonvulsant, such as gabapentin. In animal models such a strategy has been demonstrated to reduce pain-related neuronal physiological mechanisms, particularly those impacting on dorsal horn excitability. Reversal of the WDR:NS ratio to normal limits also occurs^.19

Thus the effectiveness of pharmacotherapeutic interventions to treat and manage pain in advanced cancer relies on understanding their complex underlying pathophysiological mechanisms, and utilising appropriate treatments to address each component according to the WHO analgesic ladder, in conjunction with comprehensive patient examination and assessment.

Effective communication in improving quality of end-of-life

In his book, Mortally Wounded; stories of soul pain, death and healing, Dr Michael Kearney, the first palliative care consultant appointed in Ireland, states: “We can make the process of dying easier by expertly controlling an individual’s pain and other physical symptoms, while fostering open and honest communication with him or her and his or her family. This can transform what may have been a frightening and miserable existence into a time of continuing personal growth and completion.”²⁰

Formal communications skills training (CST) is necessary to improve patient outcomes at end-of-life as the cusp between life and death is emotionally complex. Interdisciplinary discussion on death and dying should be a predictable process, with limiting of the use of invasive interventions such as CPR, which may burden a dying person’s suffering. The aim of CST is to improve institutional practices that impact on palliative care outcomes, such as patient- and family-centred decision-making, emotional, spiritual and practical support, symptom management, length of stay, family burden and overall quality of care.²¹

CST plays a vital, core part of the healthcare professional’s skill set in interacting with the interdisciplinary team, as well as a crucial element in accurate assessment, information provision and empathic listening. Lack of CST contributes to burnout and stress, and poor doctor-patient communication. Breaking bad news is problematic for doctors with inadequate communication skills. Training in properly structured, intensive communications has been shown to help doctors adopt a more patient-centred approach, use open-ended questioning, display more empathy, respond appropriately to patients’ cues and use fewer leading questions. 

In the palliative care context, most patients want accurate details of their diagnosis and prognosis, the type of cancer, information on treatment options and side-effects, and efficacy of treatment. Ultimately people at the end-of-life need to be able to spend their remaining time meaningfully and to plan for loved ones before their death. Truthful imparting of information allows choice and dignity.^22,23

Patients and caregivers mostly prefer honest and accurate information, provided with empathy and understanding. Healthcare professionals may be able to help patients cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family.²⁴

Postgraduate education in palliative care in Ireland

Palliative medicine emphasises issues related to patients’ quality of life and collaborative interdisciplinary team work. Attributes required of healthcare professionals include a high standard of ethical practice, continuing professional development, ability to work as part of a team, being patient-focused, having concern with standards, outcome effectiveness and audit, as well as an interest in change, improvement, research and development and with ability to communicate.²⁵ Postgraduate palliative care education facilitates students to acquire knowledge, develop and then apply understanding widely in practice, in keeping with the key principle of palliative medicine postgraduate education.²⁶

Established in 2010, the All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a consortium of 12 hospices and universities, all working to improve the experience of supportive, palliative and end-of-life care on the island of Ireland.

The AIIHPC has devised a group of nine key work packages, which focus on achieving its goals in the areas of education, research, and policy and practice. Two of these relate to developing high standards of palliative care education: an educational network, which brings together various stakeholders of palliative care education on a quarterly basis to ensure that the required learning opportunities are available, accessible and of the highest quality; and a work package on leadership and capacity building through individual learning and experience.²⁷

Strategy, policy and standards for end-of-life care in Ireland

The internationally acclaimed Report of the National Advisory Committee on Palliative Care (2001)²⁸ was adopted as official policy for development of palliative care services in Ireland. Published reports by the Forum on End-of-life,²⁹ the Hospice Friendly Hospitals’ National Audit of End-of-Life Care in Hospitals in Ireland 2008/9,³⁰ and the Baseline Study on the Provision of Hospice/Specialist Palliative Care Services³¹ all agreed on the need for improved standardised palliative care education and service provision. These documents all recognise a person’s right to a ‘good death’ and the need to raise awareness and provide education for appropriate standards of end-of-life care. 

The Irish Medical Council Guide to Professional Conduct and Behaviour for Registered Medical Practitioners states: “In caring for patients at the end-of-life, you share with others the responsibility to take care that the patient dies with dignity, in comfort and with as little suffering as possible. There is no obligation on you to start or continue a treatment, or artificial nutrition and hydration that are futile or disproportionately burdensome, even if such treatment may prolong life. You should carefully consider when to start and when to stop attempts to prolong life, while ensuring that patients receive appropriate pain management and relief from distress.”³²

The National Audit of End-of–Life Care in Hospitals in Ireland 2008/9 found that eight sets of care inputs impacted significantly in care outcomes: disease and cause of death; route of admission; physical environment; multidisciplinary team work; communication; support for families; staff readiness; and hospital governance.³⁰ A salient finding in the audit was that end-of-life patient care is best for people with cancer in Ireland, and that if all patients were offered the same standard of care that is currently available to patients with cancer, then the quality of end-of-life care in hospitals would be significantly improved. 

The report, Palliative Care for All, highlights the opportunity for collaboration between palliative care professionals and other specialties in meeting palliative care education and service needs for an increasingly aged population in Ireland with all types of chronic illness.³³ Standards for quality care and a series of eight modules on ethics at end-of life in hospitals are downloadable from http://www.hospicefriendlyhospitals.net

Conclusion

The specialty of palliative care is vast and complex, and some important issues – such as the essential role of complementary therapies in palliative care, the role of each member of the palliative care team, spirituality and meaning of dying and death, loss and grief, end-of life care for ethnic minorities, for children and across the life span – are not addressed in this article. 

Both the Irish Hospice Foundation and the Irish Cancer Society emphasise the importance of psycho-oncology in addressing the psychological impact of the experience of cancer for the patient and their close others across the cancer trajectory, and the development of psycho-oncology services. 

Patients and families in general prefer hospice-supported homecare to dying in a hospice or hospital. The cost benefits of an expanded home palliative care model of service for an increased aged population, who require intensive palliative care for longer and wish to die at home, is under review in the HSE five-year development framework.¹

Healthcare professionals who have opted to work in the field of palliative care require, and often possess, the resilience to develop the necessary skills and competencies to shoulder the daily experience of encountering patients’ suffering, and to offer a constructive and empathic response based on care, compassion, empathy and justice. In reducing workplace stress, it is essential that the palliative care work environment provides ongoing support to help healthcare professionals develop organisational and personal coping strategies, as well as providing access to education and training, which will enable them to be effective palliative care interdisciplinary team members.⁹

Sharon Foley, CEO of the Irish Hospice Foundation (IHF), on the launch of the IHF Strategy 2012-2015, surmised: “Everyone of us will have an end-of-life experience. That experience should be dignified, comfortable and pain-free for all of us and our loved ones.”

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