New national guidelines on palliative care have been published for the NHS in Scotland, which include a “key” focus for healthcare professionals to consider the concerns and expectations of both the patient, their family and informal carers.
Family members and carers should receive an explanation about any symptoms the patient may experience as part of their life-limiting illness or end of life period, as these are the groups that will support the patient in the absence of healthcare workers, state the guidelines.
“A lot of work has been done to ensure the new guidelines are robust and continue to be fit for purpose in the future”
They add that advice should be given to families and carers about when to call for professional help if symptoms do not improve.
Healthcare professionals should also prepare family members in how to deal with the stress associated with witnessing the decline and death of a relative, said the guidelines.
Open communication between the patient, family and health professionals in the days and weeks prior to someone dying, sharing feelings and fears, and building on trust and mutual confidence are of “paramount importance”, the document said.
Another important area of the new Scottish Palliative Care Guidelines is the wider assessment of the patient’s psychological, social and spiritual needs in addition to physical symptoms. This should result in a “holistic approach” to care, they state.
“These guidelines reflect a consensus of opinion about best practice and will enhance the quality of life for patients and their families”
Developed by healthcare professionals – including nurses and general practitioners – from community, hospital and specialist palliative care services in Scotland, the guidance includes advice on a variety of clinical areas including pain management, symptom control, palliative care emergencies, end of life care and use of medicines.
The guidelines have been approved by NHS Scotland’s Healthcare Improvement Scotland and umbrella organisation the Scottish Partnership for Palliative Care.
They sit alongside the Scottish Government’s interim guidance on end of life care for people, which was published following the decision to phase out the Liverpool Care Pathway in Scotland by the end of 2014.
The guidelines have been designed to replace the previous pain and symptom control section of the Lothian Palliative Care Guidelines, published in 2010.
Sara Twaddle, interim director of evidence and technologies at Healthcare Improvement Scotland, said: “Good palliative care is not just about supporting someone in the last stages of life, but about enhancing the quality of life for both patients and families at every stage of the disease process from diagnosis onwards.
“These guidelines reflect a consensus of opinion about best practice and will enhance the quality of life for patients and their families,” she said.
Scottish health secretary Alex Neil said the new guidance provided “clear and practical” advice to both generalist and specialist staff who offer palliative care.
“Palliative care is an extremely important and sensitive area, and it’s essential that healthcare workers have all the support and guidance they need,” he said.
“A lot of work has been done with stakeholders to ensure that they [the new guidelines] are robust and measures have been put in place to ensure that they continue to be fit for purpose in the future,” he added.
Ellen Hudson, associate director of the Royal College of Nursing in Scotland said the new guidance would “provide clarity” for clinicians, so any significant decisions about a patient’s care were made with the involvement of all the “appropriate healthcare professionals, as well as the individual and their families”.
She said: “They will also ensure that decisions are communicated in a timely and sensitive way and that the wellbeing of relatives or carers is fully considered.
“To be successfully implemented, health boards must make sure that all staff have the necessary training and support put in place,” she added.
Sandra Campbell, Macmillan lead cancer nurse consultant at NHS Forth Valley, represents the RCN on the Scottish Government’s national advisory group for living and dying well.
She said: “I welcome the guidelines to support staff on the ground in the continued delivery of excellent palliative and end of life care, particularly in addressing the sensitive issues of communication around nutrition and hydration at the very end of life.
“The value of including the public in this process has enriched the guidelines and made them accessible for all those involved,” she added.