Palliative care is, first and foremost, about life. It is an approach to care that is life-affirming and life-enabling.
“You matter because you’re you, and you matter to the end of your life. We will do all we can not only to help you to die peacefully, but also to live until you die.” (Dame Cicely Saunders)
This quote from Dame Cicely Saunders, one of the founders of the modern hospice movement, captures the person-centred and life-enabling approach that underpins palliative care. The ultimate aim of palliative care is to enable every person with an illness from which he/she will not be cured, to live as well as possible right up until he/she dies. In its modern sense, this is a relatively new concept, originating in the late 1960s / early 1970s.
The World Health Organisation defines Palliative Care as follows:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.
The palliative care approach was initially applied to people with cancer, but the last two decades have seen an increasing recognition of the palliative care needs of everyone with a life-limiting illness, irrespective of what that illness is. International literature has demonstrated that patients with many non-malignant diseases have the capacity to benefit from palliative care services, and have symptom profiles that are comparable to cancer patients. Here in Ireland, the call for “palliative care for all” was made in the mid-2000’s (Irish Hospice Foundation and HSE, 2008, and more recently a global petition seeking for palliative care to be recognised as a human right (The Prague Charter, 2013), was launched. This was an international campaign to raise the profile of access to palliative care.
What is the Aim of Palliative Care
Palliative care aims to enable a person to get on with daily life and be as independent for as long as possible in the most satisfying way he or she can, within the limits of their illness. It focuses on adding ‘life to a person’s years’ rather than ‘years to a person’s life’. Recent research has shown that early referral to palliative care not only led to significant improvements in patients’ quality of life and mood, they also survived longer as compared with patients receiving standard care.
When is Palliative Care needed?
The palliative care approach is applicable across all illnesses that cannot be cured, all ages, and in some cases, from the time of first diagnosis. Most deaths in Ireland (other than RTAs, accidents, poisonings and suicide) can be anticipated by the treating clinicians. The international literature suggests that, “If a clinician answers ‘No’ to the following question: Would you be surprised if your patient died in the next 6-12 months?” then a palliative care approach should be considered. This could be the entry point to an informed discussion between the treating clinician, the patient and if appropriate, the family.
How is Palliative Care delivered?
Palliative care is delivered in a variety of ways, all with the aim of bringing the service to the patient rather than vice versa.
The Report of the National Advisory Committee on Palliative Care (NACPC) (2001), which was adopted as government policy, recognised that patients with advanced disease have varying levels of need, and therefore require different levels of palliative care expertise.
The Report describes three levels of palliative care service provision:
“Level one – Palliative Care Approach: Palliative care principles should be appropriately applied by all health care professionals.
Level two – General Palliative Care: At an intermediate level, a proportion of patients and families will benefit from the expertise of health care professionals who, although not engaged full time in palliative care, have had some additional training and experience in palliative care.
Level three – Specialist Palliative Care: SPC services are those services whose core activity is limited to the provisional of palliative care.”
The Report recommended that in each region (which at that time constituted a health board area) “all three levels of service provision should be available and all patients should be able to engage easily with the level of expertise most appropriate to their need.
Specialist Palliative Care is delivered by a multi-disciplinary team of health professionals who work together to provide care and support to the patient and family, depending on their needs and the available resources.
Led by a Palliative Medicine Consultant, the team includes doctors and nurses, social workers, psychologists, chaplains and pastoral care workers, physical and occupational therapist, pharmacists and dieticians. The team may also include complementary therapists. Specialist Palliative Care services will typically have a presence in acute hospitals, in community hospitals, in nursing homes, and in patient’s own homes.
It is however important to recognize that the provision of palliative care is the responsibility of the whole healthcare system and not just specialist palliative care services.
The term ‘generalist palliative care providers’ refers to all those services, health and social care providers who possess ‘palliative care approach’ or ‘general’ palliative skills. Their role is fundamental to the provision of high quality care for people with life limiting illnesses, and the needs of many patients with life-limiting conditions can be appropriately and effectively met with the support of generalist palliative care providers.
Palliative Care can be provided by GP’s (working with the palliative care team); public health nurses and trained nurses and staff in residential and nursing homes and in general hospitals can provide a general level of palliative care.
However, should a patient experience unstable symptoms or problems of high intensity, complexity and/or frequency as a consequence of their illness, then input from specialist palliative care services should be provided. It is essential that systems of care are sufficiently flexible to ensure that specialist services remain aligned to the changes in level of need, respond promptly and collaborate effectively with generalist providers.
Where should Palliative Care be delivered?
Palliative care is an approach to caring for people with illnesses that will not be cured – it is not about a geographical place. In Specialist Palliative Care (SPC) we aim to provide a service without walls, going to wherever the patient is, literally, as Dame Barbara Monroe (former CEO of St Christopher’s Hospice) puts it, to deliver “palliative care in the bed you’re in”, whether that bed is in an acute hospital, community hospital, nursing home, hospice, or indeed your own bed in your own home.
Specialist Palliative Care (SPC) works best as an integrated programme – this means combining inpatient (hospice) beds with hospital-based inpatient and outpatient services, community services, bereavement care, and education and research services, with seamless pathways between one care setting and another, so that the patient and their family can access the element of care that is most appropriate at any given point in time.
An example would be a SPC programme providing in-reach to community hospitals and nursing homes, so as to avoid situations that necessitate sending elderly patients to the Emergency Department inappropriately and, if and when these patients are admitted to hospital, that their discharge back to a more appropriate setting is expedited. Similarly, SPC services work alongside Paediatric and primary care teams in enabling children with life-limiting illnesses to be cared for in their own homes.
A core value of palliative care is ‘the prevention and relief of suffering’. Support provided to family caregivers by the inter-disciplinary team throughout the patient’s journey, and bereavement support after the patient’s death, helps to prevent potential physical and mental ill health resulting from having lost a loved one. (It is important that after-death bereavement support for families is factored in when implementing a “money follows the patient” model of healthcare provision).
Who should deliver Palliative Care?
Palliative care is everybody’s responsibility.
For complex patients, specialist palliative care services will be directly involved in delivering care to a patient at any point, and sometimes throughout, the patient’s illness journey, working alongside generalist services and all other specialties. However, there are other patients whose needs are such that they don’t require the SPC team to provide care directly to them; rather the need is for the SPC team to provide on-going education and support to the primary care team or other specialist team looking after them.
Who can benefit from Palliative Care?
Anyone of any age with a life-limiting illness can benefit from palliative care. Ideally palliative care should begin at the time of diagnosis and continue across the trajectory of the life limiting illness or condition.
Traditionally palliative care was connected with the treatment of cancer patients. Nowadays increasingly, people with other kinds of advanced life limiting illnesses such as neurological diseases, heart failure, renal conditions, chronic obstructive pulmonary disease ect., are being seen by palliative care teams.
Palliative care can be given at the same time as curative treatments such as chemotherapy and radiation. The palliative medicine physician and team often provide patient care in an integrated and supportive way with other specialist doctors in areas such as oncology, cardiology, neurology, nephrology, in order to manage the symptoms and side-effects of curative treatment and therapies provided in these areas of care.
Where is Palliative Care Available?
Palliative care is provided in hospitals (delivered by the Specialist Palliative Care team and often in conjunction with other therapies and treatments) through in-patient and out-patient services; in the community, in hospices (often called Specialist In-patient Units) which also provide Day Care (outpatient) and in the patient’s own home (delivered by home care teams attached to Specialist In-patient units). Palliative Care can also be delivered in residential care settings such as nursing homes.
The aims of palliative care are the same regardless of where the patient receives it.
How can Palliative Care be Accessed?
A person’s own GP or hospital doctor normally makes a referral. Referral to palliative care can be organized as soon as a diagnosis is made. Palliative Care is funded by the health service in partnership with voluntary sector. Services are free to patients and family.
Further details on accessing Palliative Care Services is availble through the HSE National Clinical Programme for Palliative Care Eligibility Criteria for Access to & Discharge from Specialist Palliative Care Services Specialist Palliative Care Eligibility Criteria and to the Specialist Palliative Care Referral Form can be found here Specialist Palliative Care Referral Form
Is Palliative Care the same as End of Life Care?
While palliative care is often equated with end of life care, and end of life care in integral to palliative care there are differences:
Links to Further Resources and Information:
HSE National Clinical Programme for Palliative Care http://www.hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/
Report of the National Advisory Committee on Palliative Care 2001 http://www.hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/Resources/reportnationaladvisory%20committee%202001.pdf
Palliative Care Services – Five Year/Medium Term Development Framework http://www.hse.ie/eng/services/Publications/corporate/palcareframework.pdf%20Five%20Year/Medium%20Term%20Development%20Framework
Palliative Care Competence Framework competencyframework