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.
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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 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 misinterpretation by using such other words.
The Nurse needs to explore the issue of pain and help to identify the source. Location. Intensity, and Quality of the pain help to identify the source. Eg. Bone, visceral or nerve pain. Identifying the source aids in determining the appropriate treatment method. The expert Nurse will be aware that nerve pain will not respond as well to opiates and that neuroleptic agents need to employed. As suggested earlier, as Nurses spend the most time with the patients they are able to obtain the most information on the patients response to pain management plans, they are able to educate patients on the need to take regular analgaesia; and they can be the most influential in management of pain (Lindley, Dalton and Fields, 1990).
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Of course we as nurses in Palliative Care need to be aware that not all pain will respond well to traditional or “orthodox treatments”. Seeing a patient in pain and trying all pharmacological methods without success is distressing for staff as well as the patient and it is then that nurses should further attempt to employ other methods such as relaxation, distraction and music. Studies have shown that that listening to music disrupts the chronic pain cycle. Laughter, Massage and relaxation therapies have also been shown to interrupt this chronic pain cycle (Owens & Ehrenreich, 1991) and massaging a dying patients back or feet with oil blends incorporating lavender instils in many cases a feeling of peace, contentment and lessening of pain. Heat and cold packs are also said to be beneficial in the treatment of chronic pain however heat applications are said to be contraindicated in patients with poor vascular supply and in malignancy. Most institutions have policies related to the use of thermal applications.
As most nurses working with palliative patients will know, bowel management is of MAJOR importance! The Narcotics we administer to alleviate the symptom of pain have the side effect of causing the symptom of constipation. Vigilant monitoring of a patients bowel status is essential but it is of great importance that patients are not quizzed about their bowel actions in front of visitors or during meal times. Privately and quietly please! Cameron (1992) describes the types of constipation, these being primary and secondary due to pathology or iatrogenic. The goal of bowel management should be the prevention of constipation rather than treatment of constipation and appropriate assessment, regular administration of aperients, appropriate diet and fluids and provision of conditions favourable to bowel evacuation should all be part of the nurses management plan and patient education is paramount here for without the knowledge that opioids will contribute to constipation but that regular aperients will counteract this symptom, the patient is unable to make informed choices about his symptom control.
Nausea and vomiting are other symptoms the nurse can provide valuable assistance in controlling again through adequate assessment and intervention. The nurse needs to be aware of possible causes of nausea and vomiting such as hypercalcaemia, disseminated carcinoma, renal failure and vestibular stimulation particularly in patients with primary brain tumours or secondary cancer deposits. Constipation and radiotherapy, urinary tract infection and chemotherapy- the causes are many and varied. Hogan (1990) suggests that an understanding of the various pharmacological and non-pharmacological interventions is the foundation of symptom control but that the nurse’s commitment to alleviate the symptoms is the most important variable. Simple techniques like minimising cooking smells, presenting small meals and ensuring offensive odours such as foul linen bags from the vicinity can all be employed in conjunction with pharmacological methods to minimise nausea and vomiting. Successful management requires an understanding of the cause of the symptoms.
Other symptoms that may prove troublesome for the terminally ill patient include oral thrush and stomatitis, diarrhoea, lethargy and insomnia. Dyspnoea can be the cause of great distress and the expert nurse will be aware of the need to employ techniques to minimise discomfort. These may include reducing exertion by the patient, positioning them to allow maximum comfort when breathing and improving air circulation by use of fans or open windows. Humidification by methods such as nebulised saline may also be helpful. Pharmacological methods such as morphine either orally, subcutaneously or as a nebulised solution have also been found to decrease the perception of breathlessness (Chater, 1991) and anxiolitics such as Lorazepam s/l are quite helpful. Reassurance and providing a calm environment are also helpful techniques to employ. Distressed relatives around the bedside can further increase the patients respiratory distress and it is at such times that the nurse needs to take them aside and explain to them what is happening and how they can help by remaining calm and distracting the patient or helping them to relax.
For the terminally ill patient, being in control is vital and the nurse must appreciate that the patient though suffering an illness from which he will eventually die must be allowed to keep his self respect. This self respect can be eroded enough by the nature of the disease its symptoms and suffering, sorrow and emotional pain. There are times when we as nurses see patients admitted to hospital who have already had their autonomy undermined. Whilst it may have been their wish to stay at home longer or until the end, families may feel the burden of care is too great and that they can no longer cope. This is usually when a new symptom presents that the family feel unable to manage. Nurses in the community may sometimes be able to prevent this situation arising by offering a more frequent or higher level of care supported by a Palliative Care Service, education of the family about the patients symptoms and how to help manage them. Sometimes admission is not what the patient wishes but the service is unable to provide appropriate management in the home. There is then an onus upon those providing the care to look at all options to enable the patient to achieve his goal of returning home. To be autonomous means to have choice and control in our own lives yet we must accept that total autonomy is hardly ever possible. Sometimes there are circumstances in which it is not possible to challenge on the patients behalf- times when the patient may wish to have their autonomy eroded. There are times when the patient may not want our advocacy and times when we may not be able to give it- for example controversial ethical issues such as euthanasia. (Coyle, 1992).
The nurse may sometimes develop feelings of helplessness and insecurity because of her unrealistic expectations of herself. The complex role we play in management of the terminally ill sometimes may lead the nurse to think she should be all things to all people — the doctors ‘handmaiden’ the patients advocate, the families sounding board. Sometimes nurses can become over involved, infringing on the autonomy of the patient and the family (Scanlon, 1989) and must be aware of when to withdraw. At times when caring for a patient with uncontrollable physical or emotional pain the nurse may feel herself to be a failure. Add to this the likelihood of inadequate resources and staffing, staff conflict and role conflict and there is a pretty good recipe for stress. Abraham and Shandley (1992) list five main sources of work stress. These being: 1. Work overload, 2. Difficulties relating to other staff, 3. Difficulties involved in nursing critically ill patients 4.concerns over patient treatment and 5. Nursing patients who fail to improve.
This again emphasises the fact that nurses specialising in palliative care are likely to suffer high levels of stress.
To help cope with these high demands and continue to maintain the delicate balance between what the patients want and what the health professionals think the patient needs, nurses need to arm themselves with expert knowledge of symptom control, and be well aware of ethical issues related to palliative care. Nurses also need to maintain open active communication with their peers and other members of the facility. We must also realize that even if we do not influence a situation or supply an answer to all needs and if our patients do not maintain total autonomy, it is enough that we have been with them, supporting them as best we can in their journey to the end of their life.
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