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 Ro et al 2011

Cultural influences on reduction of oral intake

Western culture

reducing ingestion accelerates death regards reduced oral consumption as a sign of death and not a cause

Hindu culture

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 Ro 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 Ro 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 Ro 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 Ro 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

Disease trajectory: Advanced cancer

KPS Short period of evident decline

Terminal Phase Incurable Cancer

Time / Years
Murray et al BMJ 2005;330

Disease trajectory: Stroke/Dementia

KPS
Prolonged dwindling

Stroke / dementia/ frailty 0 Time / Years

Terminal Phase

Murray et al BMJ 2005;330

Disease trajectory: Chronic heart/respiratory failure

KPS
Long term limitations with intermittent serious episodes

Chronic heart / lung failure Terminal phase

Hospital admissions Hospital admissions

Time / Years
Murray et al BMJ 2005;330

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).

Weissmans triad A dying patient with a feeding tube, restraints and pulse oximetry
Dying Patient with feeding tube

Restraints

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
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 wellbeing 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

T. Morita et al 2007

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;109:723726. 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, 4:272275. Del Ro 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