Catholic Medical Quarterly Volume 63(4) November 2013

What is palliative care and patient advocacy?

Theresa Lynch RGN

Florence Nightingale wrote that, "The needs of the spirit are as critical to health as those individual organs which make up the body". Ever since then, spiritual care has been part of nursing (Hutchison 1988). Patient advocacy is recommended as part of the role of the nurse according to the Nursing and Midwifery Council code of professional conduct (NMC 2008). Despite this expectation of the nursing profession, some argue that the role of the nurse as advocate is neither an optional extra nor one for the faint-hearted (Copp 1986).

Palliative Care can, and should be considered as intensive a type of care as any other. The field of care is one which requires all professionals to be creative, inventive and excellent communicators who are well placed as companions with their patients, every step of the way. The historical expectation of the Nursing and Midwifery Council is to remind nurses that they will be at risk of disciplinary action if they do not follow their professional code of conduct, which insists on care which is evidence-based. The NMC professional code of conduct (2008) can be used to protect both patients and nurses. It states:

“You have a duty of care at all times and people must be able to trust you with their lives and health. To justify that trust, you must:

• make the care of people your first concern, treating them as individuals and respecting their dignity”

• work with others to protect and promote the health and well being of those in your care, their families and carers, and the wider community.

The code further states:

“As a professional, you are personally accountable for actions and omissions in your practice, and must always be able to justify your decisions” (NMC 2008).

But, in the recent review of the Liverpool Care Pathway chaired by Baroness Neuberger, the review panel members had concerns about a lack of guidance for nurses caring for people at end of life, “because this is an essential and integral part of nursing practice; it may explain, at least in part, why the Review panel has heard in this review so many examples of poor quality nursing of the dying. It therefore recommends that, as part of its work to review the Code in preparation for revalidation, the NMC provides such guidance as a matter of priority” (LCP independent review 2013, p.46).

The Liverpool Care Pathway review contains conclusions and recommendations which allow healthcare professionals to review the fundamental principles of treatment and care for all patients.

Individualised care plans

Firstly, an individualised, rather than a prognosis-based care approach requires honest communication. This is required within the care team itself, towards the patient, wherever possible, and with any family members.

Dying people are all too easily reduced to “thing hood” by those who cannot bear to deal with the suffering and disability of those they love. Detachment is an understandable defence, but withdrawal of contact, affection, and care is probably the greatest single cause of the dehumanization of dying (Dennis 2007).

Discussion and spiritual awareness

An optimal care culture must involve discussion with relevant members of the multidisciplinary team whose expertise and valuable opinion does not always end when the patient is deemed eligible for palliative care. Nursing acknowledges that the needs of the spirit are as important as physical needs for a person's well being. Increased awareness and preparation, together with a united approach to this dimension of nursing practice, will be shown to enhance the quality of care and the on-going development of the profession. Faced with mortality, people often search for meaning in their own death or in the death of a loved one. Symptoms may reflect the presence of physical but also spiritual, social, emotional and psychological needs. To support individuals during this time of transition, the health care provider can help patients incorporate spiritual care into the plan of care.

"The needs of the spirit are as critical  to  health  as those individual organs which make up  the body" - Florence Nightingale

Therefore, sharing the expertise of the whole health team, where required, does not necessarily result in inappropriate investigation and interventions (an often over-stated fear among some professionals) but can instil more trust and confidence in patients and their families that their health professionals will properly assess and individualise their needs for appropriate help, treatment and symptom relief as required in line with holistic care approaches.

Needs based symptom control

Secondly, appropriate relief and route of any symptom control measures, require the other fundamental of nursing and medical care, namely competent patient assessment, including the seeking for consent, wherever possible, to effective, individualised and above all appropriate symptom relief.

This care culture encourages patients to trust their carers as their advocates, to plan thoughtful, compassionate and intelligent strategies to achieve gold standard care for them, at whatever stage of life they may be. Patients and the public are very sensitive to terminology as applied by health professionals. Over emphasis on the term 'end of life care' can alarm patients and possibly contribute to self-fulfilling prophecies as explored within the LCP recent review. Patients and loved ones warrant assurance that their problems will be assessed and managed as a priority, in partnership with them. This can engender hope, even where patients are fully aware that their prognosis may be poor.

Assessment

Spiritual Distress is an approved nursing diagnosis which McFarland and McFarlane (1997) define as "a disruption in the life principle that pervades a person's entire being and that integrates and transcends one's biological and psychological nature."

Health carers must assure their patients and their loved ones that symptom control can be achieved to allow patients to live well at all stages of their illness. These assurances neither employ a defeatist approach at the outset, nor result in a cocktail of irrelevant drugs, but promote applicable, appropriate and humane, life sustaining measures. This constitutes holistic care, to address the important concept of 'unfinished business' wherever possible.

Tolstoy showed the importance of companionship to provide comfort for someone feeling alone and in need of empathy through sensitive human contact: “It was a comfort when Gerasim sat with him sometimes the whole night through . . . Gerasim was the only one who did not lie; everything he did showed that he alone understood what was happening, and saw no need to conceal it . . .
and so the relationship was a comfort to him” (Tolstoy 1886).

For nurses to fulfil their role as patient advocates, the culture within which they practise needs examination to allow the necessary support and educational provision for nursing competence and compassion in care of the vulnerable. The review committee members have concluded the main body of their report on page 49, with the following salutary statement: “While the Government cannot itself change the way the nation thinks about death and dying, the professional bodies can play their part by taking a lead among their members. What the Government can do, however, is ensure its arm’s length bodies collaborate with the clinical professional bodies and other key players in the system, and it can inject considerable funding into the system, to ensure that guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever”.

Conclusion

I conclude with a quote from Dr Ron Panzer, President of the American Hospice Patients Alliance. He states that:-

 “if every patient, no matter what their disease process, is given the same treatment, then the clinically-precise, wonderful interventions that can alleviate suffering at the end-stages of many diseases are all thrown to the wind,' and hospice is reduced to a death mill” (Panzer 2011).

Theresa Lynch is Chair of Nurses Opposed to Euthanasia