FREE ESSAY ON 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.
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).
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. 
CONCLUSION
To help cope with these high demands and continue to maintain the delicate balance
between what the patient wants 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 Multidisciplinary Team. Employing
some of the strategies we suggest for our patients to aid in relaxation such as Music and
Laughter will also help in reducing levels of stress. But ultimately we must also realise
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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