nourishment more than nutrition_dr yeat choi ling
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10th Malaysian Hospice Congress, Johor Bahru, MalaysiaTRANSCRIPT
Nourishment More
Than Nutrition:
At The End of Life
Dr Yeat Choi Ling
Palliative Medicine Physician
Hospital Raja Permaisuri Bainun Ipoh
1st June 2012
Contents
Definitions
Types of feeding
Disease trajectory
Common and uncommon questions
Case studies
Complications of clinically assisted nutrition and hydration (CAHN)
Ethical Issues
Ways to minimise distress and optimise intake
Definitions
Nourish:
To furnish the essential foods or nutrients for maintaining life. To provide with food or other substances necessary for sustaining life and growth.
Nourishment:
Any substance that nourishes and supports the life and growth of living organisms.
Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.
Definitions
Nutrition: The process of nourishing or being
nourished, especially the process by which a living organism assimilates food and uses it for growth and for replacement of tissues.
Good nutrition can help prevent disease and promote health.
6 categories of nutrients: protein, carbohydrates, fat, fibres, vitamins and minerals, and water.
Food: a basic human need
Offering food symbolizes love and nurturing.
The provision of food has profound emotional and
social meanings for patients and families.
Emotional impact of the
reduction of oral intake
An important source of anxiety for
patients, families, and health staffs.
Patients force themselves to eat out of
the fear that they may die of hunger or
thirst, result in indigestion and
discomfort. Del Río et al 2011
Cultural influences on reduction
of oral intake
Western culture
reducing ingestion accelerates death
Hindu culture regards reduced oral consumption as a sign
of death and not a cause
Chinese culture if a person dies hungry, the soul becomes
restless and hungry (hungry ghost)
there is a preference in Taiwan for CANH at the end of life
Del Río et al 2011
Perceptions and attitudes of
families
Families are often more worried about
anorexia and hydration than the patients
No one wants to make the decision to 'starve’ their family member to death!
Families with a low level of acceptance and awareness of the patient's eventual death: insist on force feeding
pressure their loved ones to eat and drink
believe that increase ingestion will extend survival and improve the QoL
Del Río et al 2011
Perceptions and attitudes of
families (cont…)
Family member's good intentions generate loneliness, guilt, and helplessness in the patient.
Families that accept the evolution of the patient toward an anorexic state: able to put their time, energy, and focus on
other care-giving activities
accept the progressive reduction of food and liquid ingestion and expect it as a process of dying
Del Río et al 2011
Perceptions and attitudes of
patients
It is usually easy for the patient to accept
the change due to the discomfort
associated with eating.
For patients:
reasons for CANH
• preserving life, palliation of symptoms, struggle
against illness, and anxiety
reasons against CANH
• becoming a burden, prolonging suffering, and fear
of dependence
Perceptions and attitudes
among doctors and nurses
Related to the influence of cultural and religious factors
Most doctors expect the following benefits for patients receiving feeding tubes: improve pressure ulcer healing
survival
nutritional status
functional status • not supported by objective evidence
Doctors who were more likely to recommend AH: less involved in the care of terminally ill patients
view AH as part of minimal care
Doctors with expertise in palliative care considered AH a form of active medical treatment.
Del Río et al 2011
Perceptions and attitudes
among doctors and nurses
(cont…)
Many nurses considered ANH a basic
measure and believed that it:
ensures an adequate mental orientation
prevent delirium
reduce anxiety or feelings of abandonment
in the patient
prevent death from hunger
improve the patient's physical energy
Case Study
Nourishment not Nutrition
Types of Feeding
Natural Feeding
Unassisted
Assisted Spoon-feeding
Bottle-feeding
Syringe-feeding
Clinically Assisted Nutrition and Hydration (CANH)
NG tube
Tube in abdominal wall (Gastrostomy, jejunostomy)
Intravenous
At the end of life, feeding
ceases to have a role in
providing pleasure, social
fulfillment and prolong life…
How do we know that patient is
at the end of life?
Understand disease trajectory –
malignant and non-malignant
KPS
Time / Years 0
Incurable Cancer
Short period of evident decline
Terminal Phase
Murray et al BMJ 2005;330
Disease trajectory: Advanced
cancer
KPS
Time / Years 0
Stroke / dementia/ frailty
Prolonged dwindling
Terminal Phase
Murray et al BMJ 2005;330
Disease trajectory:
Stroke/Dementia
KPS
Time / Years 0
Long term limitations with intermittent serious episodes
Chronic heart / lung failure
Hospital admissions
Hospital admissions
Terminal phase
Murray et al BMJ 2005;330
Disease trajectory: Chronic
heart/respiratory failure
Common Questions
In patients with advanced cancer
Do people die because of starvation?
Do people die because of
dehydration?
Does clinically assisted nutrition
prolong survival?
Does clinically assisted hydration
prolong survival?
Not So Common Questions
Does clinically assisted nutrition
cause any harm to patients?
Does clinically assisted hydration
cause any harm to patients?
Assumptions about dehydration in
patients with terminal cancer
The fear…
Withholding hydration could potentially accelerate the
dying process.
Evidence showed that terminally ill patients without
IV fluid live as long as those who do have IV fluid. Smith SA 2000
Assumptions about dehydration in
patients with terminal cancer
(cont…)
Assumptions …
Dehydration is painful and
uncomfortable for dying patients.
Dehydration is associated with
abnormal electrolytes, causing
discomfort to dying patients.
Assumptions about dehydration in
patients with terminal cancer
(cont..) Studies showed:
Dehydration can cause dry mouth, thirst and
changes in mental state.
Rarely cause other distressing symptoms like
headaches, nausea, vomiting and cramps.
Diana McAulay 2001
Assumptions about dehydration in
patients with terminal cancer
(cont..)
Studies showed:
Dehydration may promote comfort:
• Reduce gastrointestinal and
pulmonary secretions • Lessen vomiting, coughing and pulmonary
congestion
• The frequency of incontinence,
negating the need for catheterisation • Reduce the risk of a urinary tract infection,
urine contamination of the skin and risk of
pressure ulcers.
Assumptions about dehydration in
patients with terminal cancer
(cont…) Numerous studies reported that dying patients'
electrolytes stay in predominantly normal ranges.
Even when electrolytes are abnormal, most patients
remain comfortable.
The assumption:
"dehydration = abnormal electrolytes = discomfort"
comes as a result of older studies of healthy people
deprived of fluids
Dehydration leads to increased dynorphin levels,
may increase comfort level. Smith SA 2000
Case Study
Tube feeding
Tube feeding
Does tube feeding
Prevent aspiration pneumonia?
Prolong survival?
Improve functional status?
Reduce infection?
Reduce pressure sore?
Tube feeding (cont…)
BMI, calorific intake and swallowing capacity
were not predictors of survival.
Better delivery of nutrients: no reduction in
infection
No improvement in survival has been found
in patients with advanced cancer.
Tube feeding is a risk factor for aspiration
pneumonia
Does not improve pressure sore outcomes
Tube feeding (cont…)
Retrospective and observational
studies of patients with advanced
dementia:
Tube feedings did not
• prolong life
• improve functional status
• improve comfort
• reduce aspiration pneumonia or other
infections.
Smith SA 2000, Sampson EL et al 2009
Tube feeding (cont…)
Tube feeding may be life-prolonging in select circumstances:
Patients with good functional status and proximal GI obstruction due to cancer.
Patients receiving chemotherapy/RT involving the proximal GI tract.
Selected HIV patients.
Patients with Amyotrophic Lateral Sclerosis.
Strongest evidence for patients with reversible illness in a catabolic state (such as acute sepsis).
Restraints
Pulse Oximetry
Dying Patient with
feeding tube
Weissman’s triad
“ A dying patient with a feeding tube,
restraints and pulse oximetry”
Case Study
Assisted Hydration
Does hydration improves
survival?
No studies have demonstrated that hydration in terminal cancer patients improves survival.
Katharine A.R. P 2010
Does artificial hydration help patients
with terminal cancer?
In an unconscious patient within hours or days of death, artificial hydration is unlikely beneficial.
What about patients with terminal illness who are still conscious and interactive?
Parenteral hydration can improve symptoms of delirium, myoclonus, and sedation but not for fatigue or hallucinations.
Bruera E 2005
So…
Providing artificial hydration may be
very reasonable in patients with
terminal illnesses but
still functional and interactive
life expectancy is on the order of
weeks to months
Case Study
PEG versus NG tube feeding
Is PEG better than NG tube
feeding?
Does PEG feeding:
Reduce the risk of aspiration?
Improve survival?
Improve quality of life in end stage cancer?
Improve infection rates in patients with
advanced diseases?
PEG is better than NG tube feeding => false
No evidence to support that PEG tubes prevent aspiration, malnutrition, or pressure ulcer formation.
PEG tubes do not improve functional status.
PEG insertion did not prolong survival in patients with advanced dementia.
Meier 2001
QOL did not improve after PEG insertion for
patients with motor neuron disease
Langmore 2006
for patients with advanced cancer Bozzetti 2002
PEG Complications
Wound infection
Leakage
Cutaneous or gastric ulceration
Pneumoperitoneum
Temporary ileus
Tube blockage and breakdown
Major complications: Necrotising fascitis, oesophageal or gastric perforation, fistula inadvertent removal of feeding tube
Aspiration Commonest in neurologically impaired patients
Mortality high, 60%
Case Study
What is the role of TPN in the end of
life?
Some issues about TPN …
TPN is unlikely to benefit patients with advanced cancer.
Stephen M. Winter 2000
TPN used in the pre-operative period in patients having GI cancer reduced major surgical complications and surgical mortality.
Some issues about TPN …
TPN did not improve survival rate, treatment
tolerance, treatment toxicity, and treatment
response from patients submitted to
chemotherapy and radiation therapy.
There was an increase of the risk of
infection in patients submitted to
chemotherapy and receiving TPN. Gerson Peltz 2002
What are the complications of
clinically assisted nutrition? Home Enteral Nutrition
NG tube blockage/ dislodgment(0.26 per year)
PEG site infection
Aspiration (25%-40% for PEG) M. Molly Mcma 2005
Nasal or esophageal necrosis Restraint
Home Parenteral Nutrition
Catheter sepsis (0.67 per year)
DVT (0.16 per year)
Metabolic instability(0.50 per year)
Distressing symptoms like nausea, vomiting, drowsiness and headache
Restriction on family life and social involvement Pironi 1997, Orrevall 2005
What are the potential side
effects of artificial hydration? Worsening of peripheral edema, ascites and pleural effusions.
Peripheral edema may result in decreased mobility, increased skin breakdown, and distressful pressure.
T. Morita 2005
Cerebral edema may result in mental disturbance, convulsions, coma, twitching, or hyperirritability.
A potential barrier between the patient and their carers and loved ones. It might stop the patient to be cared for at home.
Risk of phlebitis and infection of the entry site.
Restraint.
Case Study
Ethical issues
Ethical controversy centres around
assisted nutrition …
Is it a medical intervention or a basic provision of comfort?
Both parenteral and enteral nutrition have been mistakenly viewed as feeding
They are medical interventions with associated risks and cost
How and by whom should decisions be made with regards to medically assisted nutrition in patients who no longer have the capacity to make decisions for themselves.
Ethical Decision Making at the
End of Life
Governed by Ethical Principles
Autonomy (freedom of self -
determination)
Beneficence (doing good)
Non - Maleficence (doing no harm)
Justice (fairness) Beauchamp TL: Principles of Biomedical
Ethics
Flow chart for artificial hydrationand
nutrition for terminally ill cancer
patients
T. Morita et al 2007
Clarify the general treatment goal consistent with patient and family
values.
Comprehensive assessment
• Potential effects of artificial hydration therapy on patient physical
symptoms, survival, daily activities, and psycho-existential well-
being
• Ethical and legal issues
Decide on a treatment plan after discussion with patients and
families.
Periodically reevaluate treatment efficacy,
and adjust the treatment suitable for each patient
A decision-making process that
incorporates the family's
expectations and apprehensions
could improve the environment for
the patient at the end of life and
also have a positive effect on the
grieving process.
Effective communication is of outmost
importance to secure the patient's and
relatives' right to actively participate in
decision-making regarding end-of-life
care.
It is fundamental to incorporate nurses
in the evaluation of ANH, to maximize
appropriateness, and to reduce anxiety
experienced by the health care team.
There is a need to individualize the
approach for each patient toward
ANH, considering the influences
that have socio-cultural,
demographic, religious, and
emotional aspects.
Ultimate decisions about ANH
must be centered on the patient in
the context of terminal illness.
How to optimise intake and
comfort?
Restricted diets are rarely necessary.
Intake of sodium, sugar, cholesterol,
and calories is frequently diminished
and self-limited.
Early satiety is common in terminally
ill patients. Small frequent meals
optimize intake and result in increased
comfort.
How to optimise intake and
comfort (cont…) Encourage high-protein/high-calorie foods
eggs, milkshakes, ice-cream, custards, commercially prepared supplements
Powdered nutritional supplements can be added to other foods without adding volume.
Do not force foods that cause a metallic or bitter taste, e.g. red meats; fish or poultry could be offered instead.
Try eggs, cheese, or beans for protein if patient dislikes meat.
How to optimise intake and
comfort (cont…) Provide food whenever the patient expresses
hunger, not three meals a day.
Encourage intake with a gentle attitude, no pressure.
Offer small servings on small plates and serve more frequently.
Offer favourite foods but expect changes from previous preferences.
How to optimise intake and
comfort (cont…) Pleasant atmosphere and food presentation.
To conserve energy and/or reduce frustration, use "sippy cups" or large straws.
Consider appetite stimulants like steroids and megesterol acetate.
Ensure good oral/dental hygiene.
Avoid routine weighing as it places undue emphasis on weight loss.
How to minimize distressing
symptoms?
The distresses of forced feeding such as nausea, vomiting, aspiration, diarrhoea and edema result in discomfort and poor QoL.
Allow the patient to be in control (deciding the quantity, quality, and frequency of food) is the best way to maximize intake while minimizing discomfort.
Ensure issues like pain, constipation and depression have been addressed.
How to minimize distressing
symptoms (cont…) Taste and Smell Changes
Avoid foods with offensive odors. Cold foods may be less objectionable.
Dry Mouth
Use saliva substitutes.
Serve moist foods. Add gravies or sauces. Liquids may be sipped.
Sore Throat and Mouth
Provide soft, cool foods; avoid temperature extremes.
Avoid acidic, salty, spicy, or hard and crunchy foods.
Assess and treat infections (candidiasis and herpes simplex).
Use topical analgesic medications.
Meticulous mouthcare
mouthwashes
treatment / prophylaxis of candida
regular sips of fluid ( or syringing fluids)
ice chips to suck
artificial saliva
lubrication of lips
dental hygiene
denture care
How to minimize distressing
symptoms (cont…) Dysphagia
Provide consistency/texture best tolerated. Small bites.
Nausea and Vomiting
Consider anti-emetics.
Avoid offensive odors.
Avoid foods likely to aggravate nausea such as fatty, spicy, odorous, or bulky foods.
Avoid physical activity right after eating.
Avoid eating or talking about food in presence of patient who is nauseous.
Early Satiety or Bloating
Offer small frequent feedings.
Avoid carbonated beverages and gas-producing food.
Family Education
With education and sensitive communication, acceptance is possible and probable.
Nutritional needs change as illness advances; fewer calories are needed.
The disease process has altered the patient's desire to eat; the experience of eating can change from a pleasant one to a distressing one for the patient.
Food cravings can change from one moment to the next so the person who provides a requested item should not be personally offended if only one or two bites are taken.
Family Education (cont…)
Dying patients rarely feel hungry or thirsty. 64% of patients did not experience hunger at
any time 34% experienced hunger only initially 3% experienced hunger throughout stay
McCann 1994
When a patient in advanced stages of
disease comes within days of death, it is
normal to refuse any intake.
Patients should not be made to feel guilty
because of "not trying to eat." It is not a
matter of not wanting to, but rather, of not
being able to eat.
What can family members/
caregivers offer? Family members should not
feel powerless when they
cannot provide good nutrition in
the form of food and fluid.
Refocus of caring emotions.
The patient's mind and spirit
can be nourished with genuine
and loving words and gestures,
pain control, intellectual
stimulation, spiritual guidance,
and humour.
Thank you
References
Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews 2009, Issue 2. Art. No.: CD007209. DOI: 10.1002/14651858.CD007209.pub2.
Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted nutrition for palliative care in adult patients. Cochrane Database of Systematic Reviews 2008, Issue 4. Art. No.: CD006274. DOI: 0.1002/14651858.CD006274.pub2.
M. Molly Mcma et al. Medical and Ethical Aspects of Long-term Enteral Tube Feeding. Mayo Clin Proc. 2005;80(11):1461-1476.
Gerson Peltz. Nutrition support in cancer patients: a brief review and suggestion for standard indications criteria. Nutrition Journal 2002, 1:1:1-5.
Stephen M. Winter, MD. Terminal Nutrition: Framing the Debate for the Withdrawal of Nutritional Support in Terminally Ill Patients. Am J Med. 2000;109:723–726.
Brian Burnette and Aminah Jatoi. Parenteral nutrition in patients with cancer: recent guidelines and a need for further study. Current Opinion in Supportive and Palliative Care 2010, 4:272–275.
Del Río et al. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff. Psycho-Oncology 2011. doi: 10.1002/pon.2099