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Palliative Care

Palliative Care The role of the expert palliative care nurse is complex and unique. The nurse functions as an integral part of a Multidisciplinary team, providing expert skilled assessment and nursing care, supporting the patient and the family to make informed choices thereby encouraging the patient to continue to make autonomous decisions about their care towards the end of their life. However, often the nurse will find herself dealing with difficult family dynamics with family members having differing expectations of the type of care that the patient should be receiving, staff conflict over treatment methods or strategies and high workloads. These issues can only compound the stresses on the Palliative Care Nurse and to cope with the many dilemmas she must be well armed. The complex needs of the terminally ill patients and their families make the multidisciplinary team approach the most effective method of care Staff from a range of disciplines including medical, nursing, social work, dietitian, physiotherapist, pharmacist and others bring diverse and unique skills.

As a team they provide an excellent sounding board for ethical dilemmas thereby – hopefully- enhancing ethical practice. (Latimer, 1998) The Nurse in her role is required to act as patient advocate and ensure that the patient’s rights are respected. Unfortunately this advocacy is sometimes perceived negatively as a threat or implied criticism of medical care. Doctors need to listen to the nurses more accurate perspective of patient concerns. Consistency across the team leads to better outcomes for patients. Reinforcing the same information by both medical and nursing staff help to allay patient anxiety far more than conflicting views on such things as symptom control. (Jeffrey, 1995) The members of the Multidisciplinary team sometimes make decisions.

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regarding treatments, which they may perceive to be of the most benefit to the patient whilst in fact the patient, does not perceive the benefits in quite the same way. Nurses have more prolonged contact with the patient than most other members of the team due to the hands on patient care that they do. They often establish a close rapport with the patient and the family and are most likely to be aware of the patients likes, dislikes, hopes and dreams and are privy to often delicate and very private details of the patients life. The very fact that the nurse spends so much time with the patient makes them more likely to have knowledge of this kind of information. Doctor’s rounds in a Palliative Care Unit enable the doctor to spend perhaps 30minutes maximum per day in talking to the patient. In the community, appointments times with Doctors are restrictive and Home Visits limited.

Patient Nurse dependency ratios in hospitals and palliative care units mean that Nurses are spending approximately four hours per day on one to one patient contact. Again, other team members are very limited in the amount of time they spend with patients due to the number of clients/patients they may have. A dietitian for example may spend 15 minutes with a patient twice during their six-week stay in a Palliative Care Unit or 30 minutes as an outpatient during the course of the Terminal illness. Social workers often spend long periods at a time with patients and/or their families in lengthy discussion however these discussions may only take place a couple of times over the period of the illness. Therefore the Nurse is far more likely to be aware of issues affecting patient care. There can be many difficulties for the Nurse expert providing high quality care to palliative patients whilst respecting their right to autonomy In the setting of the Palliative Care Unit, the role of the Nurse is to painstakingly assess the needs of patient and family.

These needs may be constantly changing and there is no room for the Palliative Care Nurse to become complacent in her patient care. Symptoms may be physical such as pain, nausea, and dyspnoea or psychosocial or spiritual. In identifying care needs the nurse must be able to determine who is the most appropriate team member to refer to provide optimum management of these needs. E.g. although the expert nurse will have counselling skills, she must be aware of her limitations and refer on where appropriate to counsellors, psychologist or social worker.

Mount (1993) suggests that we must first attend to physical needs and that to do this we need a detailed knowledge of therapeutics. Skilled listening and attention to detail are paramount in Palliative Care. Our listening skills not only apply to what the patient is saying, but what they may be leaving unsaid. Nonverbal cues such as facial expressions and demeanour, the need to keep the door to their room open at all times or to constantly keeps the curtains drawn. In order for patients to make choices they need to be accurately and appropriately informed, yet Vachon (1993) suggests that whilst caregivers sometimes decide not to tell patient and family what is likely to happen, at other times they may give too much negative information not allowing the patient and family to have any hope. Patients need to know at what stage their disease is and their prognosis in order to choose where to spend their remaining time.

The ethical communication of information should be timely and desired by the patient, accurate and given in words understandable to the patient and family and conveyed in a “gentle, respectful and compassionate manner.” (Latimer, 1998) An example of such communication would be that when asked by my patient (speaking about his fungating tumour) “When will this thing on my neck stop leaking?” I need to gently but truthfully explain that it will most likely continue to leak blood and fluid until he dies but also that we will continue to contain the fluid and minimise the discomfort and attempt to disguise the drainage appliance as best we can. To not advise him of the eventuality of the fluid discharge continuing is to encourage him to have false hope and expectations and further disappointment when the discharge continues and probably worsens. However, the nurse needs to recognise that some patients do not wish to have information relayed to them e.g. a patient who did not want to talk about her illness & future and continued to deny that her disease was terminal. “Don’t tell me that, I don’t want you to say those words!” Yet respect for patient autonomy demands that patients be given honest answers to their questions. Without this, patients become more uncertain and unable to make decisions about their future. Dying patients are by virtue of their physical and emotional situation, frail and vulnerable their treatment and management during this final phase of their life must be of a high standard both professionally and ethically.

The Nurse and other members of the team should seek to do the best for the patient and their family. This includes respecting autonomy, through the provision of truthful information and helping them to set realistic goals while providing genuine attentive care during the full course of the illness. Provision of symptom control hinges on accurate assessment. McCafferty and Beebe (1989) suggest that we don’t always make assessment easy by the fact that sometimes we don’t readily believe what the patient tells us or the patient may deny having pain or refuse pain relief although they may be hurting. The expert Nurse should remember that the person with the pain is the authority- they are the one who is living the experience and we must believe them if they tell us they have pain. It is all too easy to allow ones own values and beliefs to cloud our judgement Unfortunately I have seen it happen where a nurse usually not experienced in Palliative nursing will make a statement such as ” He says he has pain rated 8 out of 10 but he doesn’t look distressed” or “She was laughing and talking with her visitors 5 minutes ago and now she’s buzzing for pain relief”.

Such comments display the Nurses ignorance and lack of understanding of pain. It seems apparent that they do not understand about adaptation or distraction or that laughter stimulates the relaxation response throughout the body systems by lowering blood pressure, deepening breathing and releasing endorphins. Also of great importance is the need for the nurse to explore further if a patient denies pain despite indications that they are in fact suffering pain. There may various reasons for denial for example; sometimes our language when asking questions about the patient’s pain may be inappropriate. Some patients may not consider a dull constant ache as “pain” but an ache. Others may feel “sore”.

Other words such as discomfort and pressure may be used instead of “Pain” We as nurses need to avoid misinte …


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