End of life nursing care for the patient

Definition of terminally ill patient

Chronic disease patient is defined as terminally ill incurable, characterized by a conclusive phase of high suffering for
patient and family that results in the patient's death.
- ONCOLOGICAL PATHOLOGIES
- NON-ONCOLOGICAL PATHOLOGIES: cardiovascular, respiratory, neurological, neuromuscular, metabolic, renal,
AIDS ...
It is important to remember that TERMINAL DOES NOT COINCIDE WITH ONCOLOGY.
Too often the two terms merge to overlap. The adequate response to terminal illness is represented by PALLIATIVE CARE

Palliative care:
Palliative care is an approach that improves the quality of life of children sick and families who are confronted with
incurable diseases, through the prevention and relief of suffering, through identification early, in-depth assessment and
treatment of pain and other physical, psychosocial and spiritual problems. (World Health Organization)
- They relieve pain and other symptoms that cause suffering
- They support life and look to die as a natural process
- They do not intend to rush or postpone death
- They integrate psychological and spiritual aspects
- They offer a support system for the patient's family
- They use a team approach to meet ALL the needs of the sick family nucleus
- They improve the quality of life
- They are applicable early, along with other therapies that have it aim to prolong life and with the necessary instrumental
investigations
The places of death
If until the last century people died mainly at home, today the trend is no longer this: the places where a person's death
occurs today are varied:
- The home
- The hospice
- Residential facilities for the elderly
- The hospital Regardless of the place of death, the principles of assistance to a person who needs palliative care remain
unchanged: symptoms should be alleviated present, offer psychological and spiritual assistance to the person and those
close to him, support relatives during mourning.
• The home, usually associated with a "happy" death, but that in some cases it means further suffering (for the assisted
person and for the family); moreover, keeping the body of one's relative at home can recall memories unpleasant or can
be impractical if there are children in the house.
• The hospice, which represents an alternative to home, is specifically designed to provide palliative care. Also, it is
very important that the hospice allows you to have loved ones by your side, remaining in context "Protected."
• Residential structures for the elderly, in which people frequently attend death of residents
• The hospital, which should be a place of treatment, but which sometimes becomes the place where you die.

The nurse: the centre of end-of-life care

From the Code of Ethics for Nurses:
4.15 The nurse protects the right to limit diagnostic excesses e therapeutic not consistent with the concept of quality of life
the assisted. The nurse assists the person, whatever his is clinical condition and until the end of life, recognizing the
importance environmental, physical, psychological, relational and spiritual comfort.
4.16 The nurse supports the family members of the client, particularly in the moment
of loss and mourning. In literature the role of the nurse is called Advocatory role: it consists in taking the patient's point of
view to make it spokesman and defender, in supporting decision making and in informing punctually sick and family. It's a
holistic approach ...
Determining role in the accompaniment phase.
- Takes charge of the patient and his family members as a single nucleus
- guarantees the appropriateness of assistance and care
- check the patient's symptoms and comfort
- provides constant information and emotional support
- remodels the interventions based on the new needs of the patient and al appropriateness criterion.
The nurse, as highlighted in the literature, is the figure professional who first detects signs of impending death …

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Signs of imminent death:
(Costantini et al. 2008)
Early phase: lodging, reduction of autonomy and loss of interest, cognitive changes (increased sleep hours, possible early
signs of delirium)
Intermediate phase: further cognitive changes (clouding, patient slow to respond to stimuli, only occasionally awake),
rattle, decreased food / water intake, decreased urine production, progressive dysphagia
Terminal stage: coma, sometimes fever, pattern changes respiratory (periods of apnea, polypnea, irregularity), cooling of
the extremities and patches, decreased in blood pressure and heart rate
In the conscious patient, at the early stage, there is the onset of a new feeling, defined in Literature: psychological distress

Psychological distress
- Loss of meaning and value of life
- Feeling of weight for others
- Anxiety, panic, fear
- Sense of abandonment, disappointment and loss of hope
- Destruction of personal identity
Remodelling of nursing interventions:
- Respect the patient's will and ensure his comfort
- Do not interfere with effective control of symptoms and pain
- Do not speed up or slow down death
- Don't bring unnecessary suffering

The reshaping of the interventions is itself the first nursing intervention. require simply that what is routinely done is
reconsidered in the light of changing goals of care.
Routine nursing interventions
- The detection of vital signs;
- Prevention and management of pressure sores;
- Personal care and oral problems;
- Management of urinary and intestinal problems;
- Management and administration of therapies;

The detection of vital signs must be adapted to changed conditions, since it can increase discomfort and patient suffering
(for example: capillary blood sugar). Failure adaptation, can also fuel false expectations or hopes. On the other hand, a
sudden and radical reduction could to generate a sense of abandonment in the patient and family members. Prevention and
management of pressure sores must be remodelled to ensure the well - being and comfort of the patient. For example, the
rotation of the decubitus at defined intervals must take into account any analgesic postures taken by the patient, avoiding
positioning on painful areas and not affecting rest and the comfort.
The dressing of the lesions becomes PALLIATIVE: performed only when necessary, based on the pain associated with the
change, using atraumatic material (containing costs) and paying attention the onset of bad smells.
The priority in personal hygiene at the end of life must be given to dignity, comfort and avoidance of the sense of
abandonment. Particular attention must be paid to the care of the cable oral. A patient at the end of his life in a state of
unconsciousness, in oxygen therapy, dehydrated or open mouth breathing presents dry mucous membranes and may
experience bleeding e halitosis. The oral cavity must be constantly monitored and, if possible, cleaned at least every 4
hours. You can request the collaboration of family members, who associate the function of the mouth conveyance of food,
communication and breathing. In the management of urinary and intestinal problems, it is.
It is essential to explain to the care givers the contraction of the production of urine (oligo-anuria) and frequent constipation
in patients at the end of life.
All interventions are aimed at comfort and resolution disturbing symptoms that can cause agitation and pain (bladder globe,
faecaloma ...). The same criterion applies to the administration of therapy: it is necessary to re-evaluate the patient in light
of his new condition. The oral route is often no longer usable due to compromise swallowing or in the case of patients in a
sleepy or sedated state pharmacologically. Administration of therapy should not cause discomfort or discomfort to the
patient. Professional medical-nursing integration is fundamental for the most appropriate choice of dosages, routes
administration and therapy as needed, necessary for one correct management of symptoms at the end of life (with particular
attention to pain). The preferred way in the field of palliative care is the subcutaneous.

PERSONAL ASSISTANCE AT THE END OF LIFE: CONTROL OF SYMPTOMS.

- When the chances of healing for a person with illness run out chronic-degenerative for which an unfavourable
evolution is expected to approach, we enter a phase called palliative: the goal is the accompaniment in life, the best
possible quality of life for as long as the person has.
- The next phase is the final one, and it lasts about 48 hours.
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 - The idea of death is concrete for both the patient and his family. The new goal becomes accompany and not hinder
a dignified and peaceful death.

PAIN
- In the collective imagination, the people who are affected are usually those with an end stage tumor, but it can also be
found in patients affected by any other chronic degenerative disease (for example, esophageal candidiasis in AIDS).
- Whatever the etiopathogenesis and type of pain present in the patient, it is It is important to know how to evaluate it to
treat it better. The first step to take in assessing pain is to recognize its presence. After which it must be assessed: onset,
duration, intensity, quality, factors relieving and aggravating, effects on daily activities and patient expectations.
- Pain measurement scales
- VAS (Visual Analogic Scale)
- NRS (Numering Rating Scale)
- VRS (Verbal Rating Scale)
- Once the symptom has been ascertained and a correct care planning has been carried out, the appropriate interventions
must be implemented, therefore: administer the analgesic drugs according to a personalized plan (schedules, route of
administration), educate the patient to promptly report the onset of pain, teach how to assume an effective analgesic
position, adapting the interventions to a person who is in phase terminally ill, he is unlikely to recover from what causes
his pain.
- With regard to pain therapy, the world health organization provides a sequential and gradual ("three-step")
pharmacological approach: in a first phase, nonsteroidal anti-inflammatory drugs (NSAIDs) are administered, whether
or not associated with adjuvant drugs; in the absence of effective pain control, we move on to the second phase,
associating weak opioids (with or
- without adjuvants); then move on to the third phase in which strong opioids are used (with or without adjuvants).

DYSPNEA
Dyspnea is defined by the American Thoracic Society22 as "a subjective experience
of respiratory difficulty, which consists of qualitatively distinct sensations that vary in intensity".
Dyspnea measurement scales:
NRS (Numering Rating Scale)
VRS (Verbal Rating Scale)
Dyspnea Treatment:
- drug treatments (opioids in the first instance, oxygen therapy if the cause of dyspnea is hypoxia, benzodiazepines if
anxiety is associated with it)
- cognitive-behavioural interventions.

NAUSEA AND VOMIT

- Nausea can be defined as an unpleasant and subjective feeling of desire to vomit.
- Vomiting, on the other hand, is a neuromuscular reflex that allows the forced expulsion of substances present in the
stomach through the oral cavity.
- These are difficult symptoms to bear (inability to feed freely, unpleasant taste and olfactory sensations) and to be
controlled (onset not always predictable).
- In these cases, as regards vomiting, it should be ascertained that it is really vomiting, what are the characteristics of
the expelled material, with which frequency this happens (in conjunction with meals for example) and especially if
I save it, it is patent to feces and / or gas (there may be associated intestinal obstruction).
- As for the treatment of nausea and vomiting, the nurse can provide practical advice on nutrition (small meals),
recommend distraction and relaxation techniques, assist the person during vomiting and administer anti-emetic
therapy (pro kinetics, dopamine antagonists and spasmolytics), evaluating their effectiveness.

ANOREXIA - CACHESSIA
- Anorexia (loss of appetite) and cachexia (severe and severe weight loss decrease in muscle mass) are very frequent
in patients with cancer and AIDS.
- As with any symptom, it is necessary to evaluate them to find out their causes: sometimes they are reversible
causes, and their treatment gives quick relief to the patient.
- However, it must be recognized that this syndrome is part of the natural process of dying.
- The non-pharmacological treatments have the purpose of making the moment of the meal pleasant for the assisted
person: choose foods pleasing to the patient, serve them at the right temperature, present them in small portions (the
anorexic person can be intimidated or nauseated in front of large portions of food), choose for meals i times of the
day when the person is most rested, correctly position the bedridden or dysphagia patient.

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 - Pharmacological treatments include the administration of corticosteroids, of progestogenic hormones, pro kinetics
and artificial nutrition (parenteral and / or enteral).
DELIRIUM
- This is a very painful symptom for the patient and for those around him, therefore the causes of the delirium should
be identified and treated.
- It is very important to remember that in many cases delirium is still reversible if prompt action is taken.
- If you are unable to determine what the underlying cause is, you should implement a effective sedative treatment to
control the symptom, but without carrying out excessive sedation.
- Treatment is mainly based on the administration of neuroleptic drugs (haloperidol, benzodiazepines) and on
behavioral / environmental management interventions nursing: ensure adequate lighting, provide family references,
ensure a peaceful environment and seek the support of family and friends (the constant presence of a known person
is considered very useful for the decrease of the user's agitation).
When a symptom becomes refractory ...
- “The refractory symptom is a symptom that is not controlled properly adequate, despite efforts to identify a
treatment that is tolerable, effective, practiced by an expert and that does not compromise the state of
consciousness. " (Cherny NI, Portenoy RK).
- This type of symptom, in the context of a life expectancy of the sick between a few hours and a few days, is an
indication for start a PALLIATIVE SEDATION process: "Intentional reduction of supervision by pharmacological
means, up to loss of consciousness, in order to reduce or abolish the perception of a symptom, otherwise intolerable
for the patient, although the most adequate means have been put in place for the symptom control, which is
therefore refractory ".

Nurse and palliative sedation

- The nurse has a fundamental role in every phase:
- l Prevention (sudden intervention on disturbing symptoms, can procrastinate sedation);
- l Communication and information: collection of consent and through between sick family and medical team;
- l Evaluation and recognition of physical and nonphysical refractory symptoms
- l Decision making within the multidisciplinary team
- l Administration of sedative drugs
- l Nursing care for the sedated patient and support for the family
- l Management of patient death and support for family members in mourning
A difficult practice ... (From a review of the International Literature)
- Lack of adequate theoretical-practical preparation on palliative sedation
- Widespread negative bias among healthcare professionals themselves
- Difficulty in defining the refractory symptom, (lack of tools for a unique and subjective evaluation)
- Lack of opinion on the use of sedation within the medical-nursing team
- Ethical doubts deriving from the sensation of shortening the life of the patient and directly cause death

Respondents define sedation ...

"Cessation of inconceivable suffering"
"Guarantee of a better and more dignified death"
"Moment of acquisition of awareness for patient and family"
"Right that should be reserved for all dying"
"Panacea"
But it also emerges ....
«Only those who work in hospice can fully understand the reasons for sedation; other colleagues from different business
units have qualms, difficulty and mental closure ».

Communicate with the patient

- Give the patient the opportunity to ask questions about their illness e to answer honestly is the DUTY of the
caregiver (who will NOT give again information about how much the patient wants)
- Assume that the end-of-life patient is often aware of their poor prognosis, even when not directly informed Being
available for true listening, accepting tears without running away
- The importance of silence (avoiding so-called clichés)
- Consider that the feelings of the dying person do not have predictable times within the routine of the department
Being there, even physically, not only in the care act (take your hand, sit next ...)

ASSISTANCE TO THE FAMILY.

Equally important is assistance to those close to the patient, during hospitalization and after death.

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The most frequent attitudes are:
- Denial: pretends that everything is as before, does not talk about the disease and manages to persuade the doctor not to
inform the patient of the disease.
- Distancing: does not want to be emotionally involved, asks for continuous hospitalizations, but prefers not to talk about
the situation.
- Hypercoinvolvement: it "suffocates" the patient, preventing him from being autonomous. Here the nurse must create a
private space with the patient to be free to express himself.
- Constructive: considers and respects the needs of the patient, guarantees a constant presence, but not intrusive. Respect
the carers, communication is easy, effective and unambiguous.
- We must not forget that the quality of end-of-life care also passes through the communication between staff, patient and
family.
- After death you must take care of the body (according to the procedures in use and the beliefs of the person) and the
grieving family.
- The care of the body should be preceded by the explanation of what will be done. It would be good to leave a little
intimacy to their pain and allow them to watch over the body: it is important that they feel free to express their
emotions, their feelings of guilt and their regrets.
- It is also helpful to give them a leaflet about support during mourning (if the health facility does provide): it is not
uncommon and the development of depressive pathologies should not be overlooked after the death of your loved one.
- In some centres it is customary to telephone relatives or have them visit to express their condolences and to verify how
they are facing mourning.

Communication with the family

- Communication must also be re-modulated in light of the patient's terminality condition:
- l Reassure your technical and human presence alongside the patient
- l Constantly provide clear information on objectives and benefits ongoing therapies aimed at controlling symptoms
- l Always be discreet and respectful of individual family situations (cultural, religious ...)
- l Raise awareness of maintaining, if not verbal, at least physical contact with the patient
- l Refrain from trivial sentences and from expressions of blame

During and after death

- Strive to ensure intimacy and confidentiality of the last moments
- Reassure and not blame those who do not feel like witnessing death
- Allow the free expression of emotions (choose an ad hoc place)
- Respect family decisions, customs and religious cults
- Respect the timing of family members
- Ask before acting Lower the tone of voice as a sign of respect
- Expressing closeness (also with physical contact)
- Knowing how to tolerate silence and resist the temptation to speak
- Legitimate relief reactions, relieving them of guilt
- Respect for the body

Team work
Palliative care includes a multidisciplinary team alongside the patient and his family:
- Doctor
- Nurse
- Socio-sanitary operator
- Psychologist
- Physiotherapist
- Volunteers
- Spiritual assistant
The different professional figures (and not), each with its specific role, assist the patient and his family to meet all their
needs. The sharing of objectives is maximum and foresees institutional moments dedicated to care planning for each
individual patient.
Conclusions
- Need to guarantee a good death in hospital

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- Avoid unnecessary suffering (die in pain or delusion)
- Pay attention to ALL the needs of the client (physical, spiritual, psychological ...)
- Do not "forget" the dying patient (consider him / her the patient on whom "there is nothing to say")
- Remodel all medical nursing care based on changing needs and objectives and on the APPROPRIATENESS criterion
- Taking care of the patient and the family as a single care unit
- To work as a team all going in the same direction
- Do not abandon the family at the time of death and in the immediately following stages
What could be done?
- Implement the technical training of health professionals in terms of palliative care and pain therapy. Strengthen the
psychological, relational and communicative preparation of health workers towards the terminal patient and his
family.
- Provide logistical arrangements that allow intimacy and confidentiality both for the patient in the last hours of his
life and for family members (also for communications after death).

• Create a small team of palliative care, consisting of a doctor, a nurse, an socio-sanitary operator and a professional
from the psychological area who takes charge of terminal patients in the last days of life within the various
operating units of the hospital.
• Develop ad hoc tools such as, for example, a new medical-nursing record that focuses exclusively on the patient's
new goals and needs and which provides for a timely evaluation of disturbing symptoms (pain, dyspnea ...) to act
promptly on they.