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