Palliative care of end stage renal Disease

Objectives

-Define Palliative care

- Goal of palliative care With patient has end stage of renal disease

- learn how to assess end stage renal disease before and after treatment

- Use nursing strategies to effectively manage the symptoms of end-stage renal diseases in the
palliative.

-List Barriers to implement palliative end-stage renal disease care

Outline

 Background and introduction

 Define palliative care
 Goal of palliative care with patient has end stage of renal disease
 Role of nurse in palliative care of end stage renal disease
 Components of Palliative Care of ESRD
 Assessment (Physical, Psychosocial, Spiritual) before treatment
 Assessment (Physical, Psychosocial, Spiritual) after treatment
 Barriers to implementing palliative end-stage renal disease care
 References
  Background and introduction

Chronic kidney disease is a term that includes the five stages of renal disease, the last stage
(stage 5) of which involves having a glomerular filtration rate (GFR) is less than 15 mL/min and
patients are in need of dialysis or kidney transplantation. End‐ stage renal disease (ESRD) is an
older expression widely used in literature to describe stage 5 patients who require dialysis to
survive. The symptom burden of patients with ESRD is equivalent to that of patients with cancer,
thus making palliative care crucial for this patient population. In addition, “because of shorted
life expectancy, end‐of‐life care is particularly relevant for patients with end‐stage renal disease”

Palliative care's goal is to achieve the best possible quality of life by controlling symptoms,
relieving pain and restoring functional capacity whilst respecting the patients personal, cultural
and spiritual beliefs and practices.

Providing palliative care to patients with advanced CKD begins at the time of diagnosis and
continues throughout the patient’s life. Palliative care assumes increasing importance with time
and is integral to “good deaths”as the disease progresses.

 Define palliative care

 The World Health Organization (WHO) defines palliative care as “an approach that
improves the quality of life of patients and their families facing the problems associated
with life‐threatening illnesses through the prevention and relief of suffering by means of
early identification and impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual”. The WHO also recommends that palliative care be
extended beyond the patients to the caregivers and beyond death to bereavement support.

 Palliative care is provided by a specially-trained team of doctors, nurses and other

specialists who work together with a patient’s other doctors to provide an extra layer of
support. Palliative care is based on the needs of the patient, not on the patient’s prognosis.
It is appropriate at any age and at any stage in a serious illness, and it can be provided
along with curative treatment.

 Goals of palliative care with patient has end stage of renal disease

 Nephrology nurses are becoming increasingly aware that palliative care is not
merely management of the illness at the end of life, but rather a supportive care
pathway that leads over time to a dignified end of life for the patient.
 The majority of opinions advocate the initiation of palliative care for patients and
family when ESRD is diagnosed.
  Referral to palliative care should be guided by referral protocols, supported by advice
from health professionals, and based on the person’s needs and choices.
 Delayed initiation of palliative care can result in unnecessary suffering for patients
and families.
 When initiated at the time of diagnosis, palliative care is then not exclusive from
active treatment.
 Interventions such as dialysis can take place alongside palliative care to maximize
disease control and quality of life.
 As the illnesses progresses, there will be greater reliance on palliative care
interventions as fewer active treatment options will be available, especially when it
becomes clear that the patient is no long benefiting from dialysis.

 Role and responsibility of nurse in palliative care of end stage renal diseases

 Patients with end-stage renal disease are at increased risk of developing severe
problems such as sepsis, vascular necrosis and complex neuropathy. Patients should
be assessed for their risk, and preventative interventions implemented where
necessary. If these develop, aggressive intervention is often required; however, some
patients may opt for a non-aggressive approach. Nurses should familiarize themselves
with their patients' advance care planning documentation, and proactively implement
this.
 Many patients with chronic renal disease enter end-stage renal failure with no clear
goals or priorities for their care. One of the nurse's roles is to facilitate end-of-life
discussions and engage patients in advance care planning. Most patients with end-
stage renal disease are grateful when healthcare professionals initiate end-of-life
discussions without prompting.
 Nurses should realize that outcomes for patients with end-stage renal disease vary
widely. However, the withdrawal of dialysis provides some prognostic predictability.
Generally, the length of survival following the withdrawal of dialysis averages 8 to 12
days, though this varies based on the patient's residual renal function, age and
comorbidity, etc.
 The death of patients with end-stage renal disease is characterized by uremia. Most
significantly, hyperkalemia occurs, and cells cannot sustain normal electrical activity.
Patients may display signs of toxicity, including hyperreflexia, mobility issues,
cognitive changes and eventually coma. These symptoms can be distressing to
witness; it is important that the patient's family, carers and significant others are
informed of the possibility they will occur.
  Components of Palliative Care of ESRD

 Pain and symptom management, psychosocial and spiritual support, advance care
planning, and assistance with other decisions related to end‐of‐life issues are crucial
components of palliative care for renal patients.
 The importance of psychosocial and spiritual assistance should not be
underestimated because patients as well as their family face many choices and
uncertainties when there is a diagnosis of failing kidneys, and patients often become
aware that death may not be far off.
 Some other components of palliative care include patient and staff education, peer
support networks, terminal care and bereavement programs.

 Assessment (Physical, Psychosocial, Spiritual) before treatment

 Assess the pain

The essentials of pain assessment include:

 believing the patient’s report of pain

 assessing pain in its site, character, intensity, extent, relieving/aggravating factors, and
temporal relationships; using a simple assessment tool such as a numerical scale of 1‐10
 Educating patients and caregivers at home on pain assessment and charting. The
education piece around the goals of therapy, management plan, and potential
complications can also help minimize non‐compliance.

 Patients often experience somatic and / or neuropathic pain.

 Pain may originate from musculoskeletal (e.g. renal osteodystrophy), vascular (e.g.
ischemia, necrosis), or dermal (e.g. Xeroxes, caliciphylaxis) causes.

 Assess body systems for the manifestations of CKD

 Gastrointestinal problems:
1. Anorexia
2. Changes in taste acuity and sensation
3. Constipation
4. Diarrhea
5. Metallic taste in the mouth
6. Nausea
7. Stomatitis
8. Uremic colitis (diarrhea)
9. Uremic fetor
10. Uremic gastritis (possible gastrointestinal bleeding)
11. Vomiting

 Neurological Manifestations
1. Asterixis
2. Ataxia (alteration in gait)
3. Coma
4. Inability to concentrate or decreased attention span
5. Lethargy and daytime drowsiness
6. Myoclonus
7. Paresthesias
8. Seizures
9. Slurred speech
10. Tremors, twitching, or jerky movements

 Cardiovascular Manifestations
1. Cardiac tamponade
2. Cardiomyopathy
3. Heart failure
4. Hypertension
5. Pericardial effusion
6. Pericardial friction rub
7. Peripheral edema
8. Uremic pericarditis

 Respiratory Manifestations
1. Crackles
2. Deep sighing, yawning
3. Depressed cough reflex
4. Kussmaul’srespirations
5. Pleural effusion
6. Pulmonary edema
7. Shortness of breath
8. Tachypnea
9. Uremic halitosis
10. Uremic pneumonia

 Urinary Manifestations
1. Diluted, straw-colored appearance
2. Hematuria
3. Oliguria, anuria (later)
4. Polyuria, nocturia(early)
5. Proteinuria

 Hematological Manifestations
1. Abnormal bleeding and bruising
2. Anemia

 Musculoskeletal Manifestations
1. Bone pain
2. Muscle weakness and cramping
3. Pathological fractures
4. Renal osteodystrophy

 Reproductive Manifestations
5. Decreased fertility
6. Decreased libido
7. Impotence
8. Infrequent or absent menses

 Integumentary Manifestations
1. Decreased skin turgor
2. Dry skin
3. Ecchymosis
4. Pruritus
5. Purpura
6. Soft tissue calcifications
7. Uremic frost (late, premorbid)

 Assess psychological and spiritual changes

 Being diagnosed with ESRD is difficult for patients and their families as they confront
harsh realities and choices they do not really know how to make.
  Families frequently express complex emotions and frank indecisiveness when faced with
this situation.
 Patients on dialysis often question how long it can prolong their lives and whether it
should be stopped when their conditions deteriorate significantly.
 For patients who have opted for conservative management, their caregivers can find
diagnostic uncertainty difficult and feel abandoned as they attempt to manage complex
medication regimens and dietary modifications.
 Other major end‐of‐life concerns of patients include fear of pain, loss of dignity,
abandonment and fear of the unknown. Therefore, psychosocial and spiritual support for
patients and their family are essential components of the care pathway.
 Patients cope with their diagnosis in various ways, such as denial, depression, anger,
guilt, humour, crying, prayers, rationalization, and keeping busy.
 Certain patients are more likely to have difficulties adjusting to a palliative diagnosis.
These include patients who lack support from at least one loved person; have had
previous unresolved loss or separation; have a history of early parental death or multiple
losses; use or have used alcohol or drugs in excess; have a history of mental illness;
express severe emotional reactions; lack optimism, self confidence, or assertiveness; or
have poor communication or conflict in relationships with family or physician.

Assessment (Physical, Psychosocial, Spiritual) after treatment

 Symptoms Management

Pain:
 It is usually managed using analgesics; however, these must be used with caution due
to the risk of prolonged elimination and the retention of physiologically-active
metabolites.
 There should also be regular reassessment of pain intensity and response to treatment.
 Some pharmacological principles of end‐of‐life care in patients with ESRD include
using regularly scheduled pain medications with as‐needed medications added for
breakthrough pain, not capping the provision of adequate analgesic based on fear of
patient dependence, and using intravenous (IV) agents if patients have preexisting IV
access.
 When it is not possible to completely eliminate pain, a more realistic goal would be to
optimize pain relief and focus on disability issues to help patients become more
functional in their daily activities.
 An interdisciplinary team, including a consultation to a palliative care team or chronic
pain clinic, should be utilized to manage “total pain”, which refers to any unmet
needs of the patient that may aggravate pain, such as financial or spiritual aspects of a
patient’s needs.

Psychosocial Support
 Psychosocial support refers to addressing the psychological and social problems
associated with ESRD.
  Each person is a part of a family or community unit and has emotional, social and
spiritual needs.
 As such, a large part of psychosocial support involves having peer support networks for
patients, where they can talk to and be understood by another patient with the same
illness.
 Peer mentoring by patients on dialysis who have developed a positive coping mechanism
and have been trained in mentoring other patients have been an effective way to help
patients newer to dialysis in adjusting to it.
 Other good practices of psychosocial care include home visits, telephone contact and
support, and active palliative care liaison.

Supportive Care
 There are a number of supportive care strategies that providers can use to enable patients
to better handle the diagnosis and the condition.
 Providers can find out what has helped the patient cope in the past, things that are
working now, and what the patient perceives would help him/her cope more effectively.
 Helping patients express and understand emotions, and maintain or strengthen
relationship with significant others are effective strategies as well.
 Provider should also facilitate empowerment through allowing patients choice and
control and helping them arrange affairs, make funeral arrangements, and find ways to
keep their memory alive.

Spiritual Care
 Spiritual care have identified to be an integral part of end‐of‐life care. ‘The essence of
spiritual care is “being present” for people as they confront suffering and struggle with
spiritual questions’ through establishing a trusting and empathetic relationship.
 Spiritual support involves recognizing that every person is unique and should be treated
with dignity and respect and given the opportunity to express their hopes and what means
the most to them.
 Allow people to discover their own way of making sense of what is happening to them
and to express anger, guilt, sadness and reconciliation.
 Association with particular cultural, ethnic or religious group can significantly influence
a patient’s expression and understanding of the meaning of pain and suffering, beliefs
about the cause and meaning of the illness, choice of healer and treatment regimen,
attitude toward death and dying, beliefs about the afterlife and the value of human life
and the body, and preference for death ritual, including preparation for burial and funeral
practices or memorial services.
 Healthcare providers caring for the dying and bereaved should have reasonable
knowledge of various practices of different faith groups and seek support when they
encounter situations where their knowledge is limited.
 Providers should also be aware of the need and desire of patients or families for ritualistic
actions at the end of life or during bereavement, even if they would not normally describe
themselves as religious or spiritual.
Nursing processes in palliative care of end stage renal disease

Nursing Diagnosis goal Intervention evaluation

Pain It is usually managed
using analgesics;
however, these must
be used with caution
due to the risk of
prolonged elimination
and the retention of
physiologically-active
metabolites.
Gastrointestinal -maintenance of -Assess weight changes -Nutritional status
problems: Vomiting adequate nutritional improved
,anorexia, nausea intake -Assess lab values for ( -Ideal body weight
-Take protein of high protein, creatinine iron) maintained
biologic value, high -Normal lab values for
calorie food within -Provide preference protein , iron and
dietary restriction food or palatable to creatinine
patient
-Take medication that -BP within normal
doesn’t cause nausea or
-Count calories
anorexia
-No rapid changes in -Assess for anorexia
weight ,vomiting, nausea

-Assess for patient

understanding of
dietary restriction

-Encourage intake of
protein with high
biologic value

-Lower sodium intake

Dyspnea Assess lab values for (

protein, creatinine
iron)
Delirium Delirium is usually
managed using
medication, including
 sedatives such as
haloperidol and
midazolam. The
underlying causes are
also addressed
wherever possible.
Seizures and / or These are usually
myoclonic jerking managed using
medication therapy,
including anti-seizure
medications such as
phenytoin and
benzodiazepines.
Skin If mild to moderate, Usually along the calciphylaxis is
problemsGeneralized itching is usually extensor surfaces of managed aggressively
pruritus (itching). managed using topical the arms and / or legs. using phosphate-
emollients, Standard nursing skin binding, antibiotic and
moisturizers and / or care practices should analgesic medications
ultraviolet light be utilized.
Xeroxes (dry, therapy; if severe,
roughened skin), medications such as
antihistamines may be
Calciphylaxis prescribed.

Anaemia Most patients receive

supplemental doses of
erythropoietin.
However, many
patients choose to
avoid aggressive or
invasive interventions

Barriers to implementing palliative end-stage renal disease care

1-ESRD is a chronic disease that is characterized by steady functional decline, a 20% yearly
mortality rate, and early death for most patients.

2-it is a disease with a high symptom burden that takes a toll on patient and family alike and for
which palliative care is crucial to foster quality life and death.

3- Full integration of palliative care principles and standards provides support for ESRD patients
to make difficult decisions concerning withdrawal of dialysis and can offer guidance during the
process of ending life and seeking a good death.
4-As nurses, we are often unable to deliver patients from illness and death for very long, but we
can always stand with them in their struggle, and ease their suffering by promoting and utilizing
effective palliative care practices.

Conclusion

Palliative care:

1. Provides relief from pain and other distressing symptoms.

2. Affirms life and regards dying as a normal process.
3. Intends neither to hasten nor to postpone death.
4. Integrates the psychological and spiritual aspects of patient care.
5. Offers a support system to help patients live as actively as possible until death.
6. Offers a support system to help the family cope during the patient’s illness and in their
own bereavement.
7. Uses a team approach to address the needs of patients and their families, including
bereavement counseling, if indicated.
8. Enhances the quality of life, and may also positively influence the course of illness.
9. Introduced early in the course of illness, in conjunction with other therapies that are
intended to prolong life, such as chemotherapy or radiation therapy, and includes

those investigations needed to better understand and manage distressing clinical

complications
References:

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2-. Sheila Payne, Jane Seymour and Christine Ingleton.(2004).Palliative care nursing Principle
&evidence of nursing practice

3-Palliative care nursing. Quality care of end of life.Marianne M andDeborah W

S.)2010).Palliative care nursing. Quality care of end of life. 3rd Edition.

4-.Jacquie Peden and Sandra K. Young. ) 2013(. 99common question and more about hospice
palliative care.4th Edition

5- Moss AH, Holley JL, Davison SN, et al.(2004) .Palliative care.