VNAA Blueprint for Excellence - PATHWAY TO BEST PRACTICES Clinical Conditions and Symptom
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VNAA Blueprint for Excellence
PATHWAY TO BEST PRACTICES
Clinical Conditions and Symptom
Management:
Common Distressful Symptoms
VNAA Best Practice for Hospice and
Palliative Care
Common Distressful Symptoms
Why These Symptoms?
Uncomfortable physical and psychological symptoms at the end-of-life
are common. Many of these symptoms are typical during the final
hours while others occur early on in the trajectory of decline. This
module reviews the following common distressful symptoms that occur
at the end-of-life: Anxiety, Bowel Management – Constipation, Bowel
Management – Diarrhea, Death Rattle, Delirium, Depression, Fatigue,
Hemorrhage, Nausea/Vomiting, Wounds.
2
Common Distressful Symptoms
Definition of Best Practices
1. Symptoms are treated according to
patient/caregiver preferences that
are discussed and documented.
(NCP, 2013).
2. Caregivers are educated on how to
manage symptoms and what to
expect in the final hours.
3. Clinical documentation should
include tools as part of the
assessment process to provide a
way to document decline
objectively.
3
Common Distressful Symptoms
Clinical Interventions/Actions
• Train staff to recognize the trajectory of dying including likely
symptoms, and proactively develop a plan for managing symptoms
with the patient and caregiver.
• A history and physical is needed to identify etiology and guide
treatment decisions (Coyne and Panke, 2011)
• Interdisciplinary teamwork is essential.
• Written information on specific symptoms should be available to
staff to leave in the home.
4
Common Distressful Symptoms
Anxiety
Anxiety is characterized by excessive worry and apprehension that is
difficult to control. It can be associated with restlessness or feeling
keyed-up or on edge, difficulty concentrating, irritability, muscle
tension and sleep disturbances.
5
Common Distressful Symptoms
Critical Interventions/Actions - Anxiety
Staff training should include:
• The goal should be to prevent disabling anxiety or panic attacks and
ameliorate anxiety that is contributing to other symptoms such as
shortness of breath (EPERC #145, 2009).
• Focus should be on physical signs, behaviors, the patient’s
experience and potential causes (e.g. medications).
• Both non-pharmacologic and pharmacologic interventions should
be utilized.
6
Common Distressful Symptoms
Tools
• Anxiety screening and severity questions are included
in the ESAS.
• The National Comprehensive Cancer Network®
(NCCN®) Distress Thermometer*– asks patient to rate
distress from 0 (none) to 10 (Extreme distress)
– *Linked with permission from the NCCN Clinical Practice
Guidelines in Oncology (NCCN Guidelines®) for Distress
Management V.1.2014. © 2014 National Comprehensive
Cancer Network, Inc. All rights reserved. The NCCN
Guidelines® and illustrations herein may not be reproduced in
any form for any purpose without the express written
permission of the NCCN. To view the most recent and
complete version of the NCCN Guidelines, go online to
NCCN.org. NATIONAL COMPREHENSIVE CANCER NETWORK®,
NCCN®, NCCN GUIDELINES®, and all other NCCN Content are
trademarks owned by the National Comprehensive Cancer
Network, Inc.
• Brief Symptom Inventory– a short version of the
SCL90-R instrument.
7
Common Distressful Symptoms
Bowl Management - Constipation
Constipation is defined as having fewer than 3 bowel movements per
week and is often characterized by straining, lumpy or hard stools that
are difficult to expel. Constipation occurs in 50% of hospice patients
with the incidence increasing to 70-100% in cancer patients.
8
Common Distressful Symptoms
Bowl Management – Constipation –
Best Practice
All patients who are on opioids are started on a bowel regimen to help
prevent constipation.
9
Common Distressful Symptoms
Critical Actions/Interventions -
Constipation
Documentation should include the presence of bowel sounds, the
frequency of stools, and any recent bowel changes.
Staff training should include:
• Ways to prevent constipation.
• Evaluation of drugs for their tendency to be constipating.
• Individualize treatment plans based on etiology and severity of the
condition.
• What a bowel regimen typically
10Common Distressful Symptoms
Bowel Management - Diarrhea
Diarrhea is defined as the abrupt onset of 3 or more loose stools per
day (Medscape, Reference). It is a common disorder in its acute form
and has many causes. Although less prevalent in hospice patients than
constipation, it is often very distressing to patients and stressful for
caregivers. Effects are significant as patients suffer from skin
breakdown, dehydration, fatigue and embarrassment.
11Common Distressful Symptoms
Critical Interventions/Actions -
Diarrhea
Documentation should include attention to medications and the
character and frequency of stools by using the National Cancer
Institute Scale of Severity of Diarrhea.
Staff training should include:
• Treatment is determined by the underlying cause.
• Maintain hydration.
• Anti-diarrheals can be used judiciously.
• A clear liquid diet is indicated and advanced as the diarrhea
resolves.
12Common Distressful Symptoms
Critical Interventions/Actions -
Diarrhea
Staff training -2
• Additional goals should be to maintain skin integrity and dignity.
• Medications that can be considered include opioids, absorbents,
adsorbents, antisecretory, anticholinergics, and alpha adrenergic
agonists.
• Causes include infections, malabsorption, co-morbid conditions and
treatment related.
13Common Distressful Symptoms
Death Rattle
Death rattle is defined as a type of noisy breathing related to retained
secretions that sounds like snoring or rattling during the inspiratory
and expiratory phases of respiration. It is common in nearly 25% of
dying patients (Montagnini 2004). It is a strong predictor of death.
14Common Distressful Symptoms
Critical Interventions/Actions –
Death Rattle
• Educate caregivers verbally and in writing about what to expect in
the final hours and that death rattle in normal. Written information
should be made available.
• Use of anticholinergic medications (NCI #7, 2014) is mixed with no
conclusive evidence that these medications are helpful.
• Documentation should include one of the suggested tools listed
below.
15Common Distressful Symptoms
Critical Interventions/Actions –
Death Rattle
Staff Training should include:
• Non pharmacologic interventions are the mainstay of treatment.
• There are many proposed causative factors.
• It is a strong predictor of death (Wilders, 2002), and very distressing
to caregivers and healthcare professionals.
• Typically heard in the patient’s final hours as the patient often
cannot clear secretions.
16Common Distressful Symptoms
Tools – Death Rattle
Respiratory Distress Observation
Scale (RDOS) (Campbell, 2010) –
This is an adult observational
scale that evaluates indicators of
respiratory distress including
heart rate, respiratory rate,
restlessness, accessory muscle
use and other indicators. It has
been validated for use by
trained caregivers, but not yet
for use by caregiver members.
17Common Distressful Symptoms
Delirium
Delirium is defined as acute onset of waxing and waning confusion,
decreased attention span, disorganized thinking and altered level of
consciousness. It is extremely common in the last days of life. As many
as 80% of patients develop delirium near death.
18Common Distressful Symptoms
Critical Interventions/Actions -
Delirium
Staff training should include:
• How to recognize delirium and pinpoint possible reversible causes.
• Assessment is based on a comparison of the patient’s mental status
to baseline. It should include a thorough medication review and all
non-essential drugs should be discontinued. (Montagnini and Moat,
2004)
• Interventions are based on the assessment and treatment of
predisposing and precipitating factors (Close & Long, 2012; Ross,
2001; NCI #7, 2014)
19Common Distressful Symptoms
Critical Interventions/Actions -
Delirium
Staff training-2
• Patients with agitated or hyperactive delirium may be treated with
Haloperidol (Close, J, Long, CP)
• Provide for a safe and calm environment and use of other non-
pharmacologic treatments help minimize agitation.
• Terminal delirium is extremely common in the last days of life and is
treated with supportive care.
• Patients with a significant change in arousal level, orientation and
cognitive function may be experiencing delirium.
20Common Distressful Symptoms
Tools - Delirium
• CAM – Confusion Assessment Method – validated
in multiple patient age groups and settings
– Adapted from: Inouye SK, et al. Ann Intern Med. 1990;
113: 941-948. Confusion Assessment Method. Copyright
2003, Hospital Elder Life Program, LLC. Not to be
reproduced without permission
• Memorial Delirium Assessment Scale (MDAS) is
used to rate the severity of delirium.
21Common Distressful Symptoms
Other Resources – Delirium
• See VNAA Procedure Manual 18th Edition p 179 for further
information and references.
• See
http://consultgerirn.org/topics/palliative_care/want_to_know_mor
e
22Common Distressful Symptoms
Depression
Depression is a mood disorder that is clinically manifest as diminished
interest/pleasure, depressed mood, loss of pleasure in almost all
activities. Depression occurs in 25-75% of those at the end of life.
Depression should never be ignored.
23Common Distressful Symptoms
Critical Interventions/Actions -
Depression
• Incorporate a depression screening tool into documentation to be
used for all patients.
• Suicide assessment may be indicated for individuals with suicidal
ideations or tendencies.
• A multi-symptom assessment tool that includes assessments of
well-being as well as depression can be helpful.
• Treatment resources can be identified both internally and externally
in the community.
24Common Distressful Symptoms
Critical Interventions/Actions -
Depression
Staff Training should include:
• Assessment that includes physical changes such as loss of appetite,
weight loss, situational factors, and medications.
• There are two classic questions to ask the patient: (1) “In the past
month, have you felt depressed, down or hopeless?” and (2)
“During the past month, have you felt little interest or pleasure in
doing things?”
• Antidepressants are the primary medications used to treat
depression.
• In the final days/hours additional medications are likely not
indicated.
25Common Distressful Symptoms
Tools/Resources
• See VNAA Procedure Manual
18th Edition p. 405-409.
• Geriatric Depression Scale- a
basic screening measure for
depression in older adults.
26Common Distressful Symptoms
Fatigue
Fatigue is the patient experience of overwhelming exhaustion and
tiredness and is reported in up to 90 percent of patients at the end of
life. (Anderson, et.al.) It is a major source of frustration and
devastation for patients as they near end-of-life.
27Common Distressful Symptoms
Critical Interventions/Actions - Fatigue
• Fatigue assessment of the whole person
is essential: mind, body and spirit
(Anderson, et.al. 2010)
• Utilize a fatigue assessment tool to help
document decline.
28Common Distressful Symptoms
Critical Interventions/Actions - Fatigue
Staff Training should include:
• Management strategies including management of symptoms and
underlying causes.
• Preventing fatigue by balancing activities with rest.
• Energy conservation techniques and rest are the mainstay of non-
pharmacologic management.
• Fatigue may arise from medical treatment or psychological
conditions.
29Common Distressful Symptoms
Critical Interventions/Actions - Fatigue
Staff training - 2
• For a patient expected to be in hospice care relatively long term,
treatment may be offered to address underlying causes
• Possible pharmacologic interventions include: antidepressants,
corticosteroids, psycho stimulants and medical treatments such as
blood products.
• During the final hours, fatigue and weakness are expected as a
normal part of the transition and is irreversible. This fatigue is
treated with supportive care.
30Common Distressful Symptoms
Tools- Fatigue
• Fatigue is a domain assessed in multi-symptom assessment tools
such as the Edmonton Symptom Assessment (ESAS).
• Numerous fatigue scales exist, asking a patient’s level of fatigue on
a scale of ‘0’ no fatigue to ‘10’ extreme fatigue. It is efficient,
especially if used consistently.
• A numeric rating scale can also be used to explain the impact of
fatigue on activity and quality of life.
31Common Distressful Symptoms
Hemorrhage
Hemorrhage, or excessive bleeding is a relatively rare occurrence in
hospice care according to the National Institutes of Health (NCI #12,
2014). It is more likely to occur with head and neck cancers, stomach
and esophageal cancer, and leukemia or clotting disorders. It is very
upsetting to patients and caregivers so should be anticipated based on
the patient’s diagnosis.
32Common Distressful Symptoms
Critical Interventions/Actions -
Hemorrhage
• If bleeding is anticipated it is important to prepare the caregiver
and plan to follow the patient’s wishes about interventions.
• Written information should be left in the home and the care plan
updated to reflect patient’s wishes.
• If the patient is at risk for terminal hemorrhage, discuss alternative
care settings.
• Caregiver and patient education is crucial because of the
distressing nature of heavy bleeding.
33Common Distressful Symptoms
Critical Interventions/Actions -
Hemorrhage
Staff education should include:
• Seepage of blood from eroded areas may signify an impending
hemorrhage, but more often, hemorrhage is sudden.
• Hemorrhage is signified by heavy bleeding. It may be uncontrolled,
not self-limiting and not reversible at the end of life.
• Keep the patient clean; use dark colored towels or pad to minimize
appearance of blood.
34Common Distressful Symptoms
Critical Interventions/Actions -
Hemorrhage
Staff education - 2
• Keep non-sterile gloves in the home to use if you need to clean up
after any bleeding episodes.
• Provide companionship, empathetic listening and therapeutic
presence.
• Medications should be present in the home that can provide
sedation, anxiety relief and pain relief. Fast acting sedation may be
used.
35Common Distressful Symptoms
Nausea/Vomiting
Nausea is the very unpleasant feeling of being about to vomit.
Vomiting is the spitting up of the contents of the stomach. It’s
associated with a feeling of nausea and strong contractions of the
abdominal muscles. It is one of the most distressing symptoms and can
occur in patients with any terminal condition. There are many causes of
nausea and vomiting. Nausea is present in 70% and vomiting in 30% of
patients at the end of life.
36Common Distressful Symptoms
Critical Interventions/Actions -
Nausea/Vomiting
Documentation should include a history and physical with primary
attention to an abdominal assessment and identification of potential
contributory factors.
37Common Distressful Symptoms
Critical Interventions/Actions -
Nausea/Vomiting
Staff training should include:
• Underlying causes that can be treated if possible
• Non pharmacologic interventions should be included in the care
plan.
• Many medications are available.
38Common Distressful Symptoms
Wounds
Wounds are open disruptions in skin integrity. Pressure ulcers occur in
14-28% of patients in hospice care (McDonald and Lesage 2006) while
malignant or fungating wounds occuring in 5-19% of patients with
metastatic disease (Alexander 2009).
39Common Distressful Symptoms
Critical Interventions/Actions -
Wounds
• Documentation should include identification of all wound locations,
etiology, pressure ulcer stages and risk factors. Evaluation should
include the existence of pain, infection, odor, and moisture due to
incontinence.
• Goals of care should be discussed with the patient and caregiver to
help determine what interventions are needed.
• Depending on treatment preferences, antibiotics are a
consideration when an infection is present.
40Common Distressful Symptoms
Critical Interventions/Actions -
Wounds
Staff training should include:
• Occlusive or layered dressings used to prevent seepage or odors.
• Training caregivers to provide frequent changing of bandages that
may improve the appearance of wounds.
• In the patient’s final days or hours it may be a treatment preference
not to routinely reposition the patient.
• Some patients enter hospice with existing wounds. Others may
acquire wounds such as pressure ulcers that result from immobility,
poor nutrition and poor perfusion.
41Common Distressful Symptoms
Tools
• Braden Scale – A widely used tool to
predict the risk of pressure ulcers. Six
criteria are examined: Sensory
perception; Moisture; Activity;
Mobility; Nutrition and Friction and
Shear.
• See VNAA Procedure Manual 18th
Edition – Section 24.
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