UNIT 8: COUNSELING FOR HIV AND END-OF-LIFE ISSUES

Amy Bridges, MS, RD, LDN

Kaplan University Instructor

Chapter 20: Counseling a Person with HIV/AIDS Counseling a person with HIV/AIDS about

nutrition is an essential component for overall management of the disease

By delaying the wasting and malnutrition commonly seen in AIDS patients, dietitians can presumably improve a patient’s prognosis

Nutrition intervention and medical nutrition therapy, along with education, should be components of the total health care provided to persons infected with HIV

Preparing for the Counseling Session

A nutrition therapist must be concerned about all the factors that affect the patient’s current nutrition status and his or her ability to buy, prepare, and eat food as the disease progresses

Evaluate the patient’s current symptoms, individual abilities, and needs

Consider psychological conditions, economic factors, and support systems to develop a workable and realistic plan

If friends, family, or funds are limited, enlist the aid of social services, local HIV/AIDS support groups, and meal delivery services

Develop a flexible plan with prioritized goals that will improve the patient’s quality of life and nutritional status

Weight Status

Check weight status and weight history Use nutritional assessment data to determine

which body compartments are depleted Determine energy, protein, and nutrient

goals If nutritional support is delayed until after

significant weight loss, it may be more difficult to change the patient’s malnutrition status

Deliberate weight gain may help improve his or her chances of surviving longer with HIV

Anorexia

Anorexia- loss of appetite and inability to eat

Determine the cause by checking for depression, mouth sores, dementia, anxiety, medications, and fear of increased diarrhea

Focus on a calorically dense diet and supplements

Nausea/Vomiting

Identify cause or causes and counsel patients regarding appropriate food or liquid choices and timing of meals

If needed, recommend antinausea medications to physician

Dyspnea/Fatigue/Pain

Check patient’s ability to eat and evaluate actual intake

Make meal suggestions that include easy food preparation techniques, and possibly, meal delivery or helpers to assist at mealtime

Consider alternative food routes to achieve adequate intake and counsel patient on these options

Infection/Fever

Check for presence or fluid and nutrient losses, and assume increased tissue breakdown

Adjust patient’s calorie/protein/nutrient goals, and counsel accordingly

Mouth and Esophageal Sores To avoid aggravating mouth problems,

counsel patients regarding food consistency, types of foods to avoid or comfort foods, and temperature

Diarrhea and Malabsorption

Discuss fluid and electrolyte replacement

Counsel patients to avoid caffeine and increase soluble fiber

Consider possible lactose and fat restriction

Add appropriate supplements specifically for patients with AIDS

Food Safety

HIV/AIDS patients have an increased vulnerability to food borne illness

They should be counseled concerning food safety at home and eating out, as well as safety of their water sources

Nutritional Supplements

Check any supplements the patient is using

Counsel in a nonjudgmental way regarding potential harm or concern about the unorthodox supplements

Prevent and correct any deficiencies in the patient’s diet

Enteral and Parenteral Feedings Check into physical facilities and

adequacy of feeding equipment Counsel caregivers and patient on the

formula and how to administer the feeding

Drug/Nutrient Interactions

Note all medications used including over-the-counter ones and look for potential influence on nutrient needs, absorption, and side effects

Counsel and educate accordingly

Counseling Considerations for the Person with AIDS Prioritize your recommendations Depression can occur, be aware and sympathetic One study revealed the most prominent feelings of

persons with AIDS are uncertainty, anxiety, and anger over the treatment of their illness by caregivers

Demonstrate your concern and willingness to listen A positive and nonjudgmental attitude is important Encourage a patient to be involved in his or her care

as much as possible Information for the client can be provided in an

endless number of creative ways

Chapter 21: End of Life Counseling Hospice and palliative care nutritionists counsel

patients and their families working with a different mindset - there is no expectation the patient will get better

The goal is to help make the journey as pleasant as possible; to keep them as free from discomfort as possible; and to give honest information about artificial nutrition and discontinuing food and fluids so that informed decisions are made

It is the patient’s choice how aggressive nutrition therapy will be in the palliative and hospice settings

Definitions

Palliative Care: To palliate means to make comfortable by treating a person’s symptoms from an illness

Hospice: The focus of hospice relies on the belief that each person has the right to die pain-free and with dignity and that loved ones will receive the necessary support to allow that to happen

The Stages of Dying

There are five stages of dying that both patients and caregivers go through when told the prognosis of imminent death

1. Denial2. Anger3. Bargaining4. Depression5. Acceptance

Assessment

The first step in providing palliative care is to complete a thorough assessment of the patient that includes anthropometric, biochemical, physical symptoms, psychological well-being, medication side effects, functional, metabolic, and disease related information

One must understand the nutrition status of the patient in order to be able to rationally approach care

Malnutrition and Disease

Malnutrition is a problem that is often underdiagnosed in hospitals and as many as 50% of hospitalized patients may be malnourished

Malnutrition patients may be plagued with recurrent infections, pressure ulcers that fail to heal, colonization of bacteria as a result of poor immune status, edema, anemia, fatigue

Malnutrition patients may have a poor appetite, poor ability to swallow, upset stomach, and foods may taste too sweet, sour, salty, or metallic from the medications and disease processes

Protein-Calorie Malnutrition

Malnutrition results in poor resistance to infection, poor wound healing, and fatigue, all of which may interfere with palliative treatment goals

Persons with insufficient protein and calorie intake are at risk, not only for protein-calorie malnutrition, but other nutrient deficiencies due to suboptimal food intake

Pressure ulcers can result in further complications such as infection, edema, and pain, all of which have an impact either directly or indirectly on food intake and nutrition

Cultural and Religious Issues in Palliative Care Each person, no matter what the

heritage, should be considered individually

Encourage the family or caregiver to prepare foods that are familiar and comfortable to the patient

Recommending foods for the sake of good nutrition is counterproductive if the food is unfamiliar or objectionable to the patient

Is Weight Loss Inevitable?

Regardless of the diagnosis, an unintentional weight loss of more than 5% in 30 days is indicative of a poor diagnosis at this stage

For patients who are thin, evaluation of their former weight and present weight is even more important as there may be a fine line between leanness and cachexia in these patients

Cachexia in cancer causes weight loss to be inevitable due to the disease process that results in metabolic abnormalities caused by the tumor

Tumor may require more glucose and those demand on the liver, which increases energy expenditure

Food alone is not effective in treating cancer cachexia

Weight Loss Treatment

The goal when treating weight loss, regardless of the causes, is to comply with the wishes of the patients

Food Refusal and Difficulty Eating Patients may refuse food or have difficulty

eating because of numerous reasons Infections and the antibiotics used to treat

them often result in anorexia Mouth pain caused by radiation or

chemotherapy, thrush, poor fitting dentures, or infected teeth may cause difficulty in chewing or swallowing and make eating uncomfortable

If a patient coughs or chokes when they eat, he or she may be afraid to eat

Food Refusal Treatment

The treatment team should evaluate the patient and share feedback in order to determine how to treat food refusal

Treatment assessments and suggestions include first eliminating any diet restrictions, unless disregarding them will interfere with how the patient feels

Additional Suggestions for Dealing with Food Refusal Assist with the evaluation of sadness/depression and treat Evaluate and treat constipation, nausea, and vomiting If the patient is experiencing dry mouth, determine the

cause Evaluate medications and supplements for interactions

and quality taken Encourage the family to offer many kinds of foods Consider moderate exercise to improve poor appetites Patients who want to feed themselves may benefit from

adaptive equipment Consider appetite stimulants Examine meal times Make mealtime pleasant Evaluate taste aversions and recommend solutions

If a Patient is Eating Well and Still Losing Weight

The team should check for hypermetabolic states

Look for acute infections such as urinary tract infections or even gangrene

Is there malabsorption? This is not the time for a person to follow

a low cholesterol, low fat diet or a diabetic diet unless it is intended to treat symptoms

Ethical and Legal Issues in Nutrition and Hydration

Seldom is a a critically ill patient cared for at home; they are poked, prodded, tested, and treated until it is determined that no more can be done and then they are relocated to hospice, long term or skilled care, home with home health service support, or they die in the hospital

The ADA maintains “that the development of clinical and ethical criteria for the nutrition and hydration of persons through the life span should be established by members of the health care team. RD should work collaboratively to make nutrition, hydration, and feeding recommendations in individual cases”

Questions to Pose about End of Life Nutrition

What have the patient and family been told about the disease and the prognosis?

What does eating and nutrition accomplish for the patient? What are the benefits? Will eating improve the quality of life or just quantity of life?

What were the patient’s wishes before becoming ill and unable to make decisions?

Is Artificial Nutrition or Hydration (ANH) Appropriate for Patients at End of Life? When the patient is no longer able to take

food, the question of artificial nutrition and hydration (ANH) may arise

Each patient must be considered individually and his or her potential for quality of life, not just quantity, considered when decisions are made

Decisions about the use of ANH can and should be made in the same way that decisions about other medical therapies are made

Questions for Patients and Caregivers Considering ANH

It becomes increasingly important to consider family and patient expectations when considering ANH and educate both parties on the benefits and risks of ANH

Patients, families, and caregivers must be asked what their expectations are: Do you expect the patient to return to the state of

health prior to the illness? Do you expect the patient to talk and carry on

reasonable and coherent conversations while walking, eating, and drinking as healthy individuals do?

Are these expectations achievable given what is understood about the prognosis?

Complications and Disadvantages of Artificial Nutrition

Artificial nutrition and hydration are usually administered enterally through a nasogastric (NG), gastrostomy (PEG), or jejunostomy(J) tube.

Discuss the following complications and disadvantages with the family as the situation warrants: Obstruction of the bowel can still occur with enteral feedings There is a risk of aspiration pneumonia Physical symptoms with artificial nutrition are often a result of the fluid that is

provided within the formula and water used for flushing the tube Infection at PEG or IV site is a risk Nasal necrosis, epistaxis, or acute hemorrhage at the placement site may occur Venipuncture blood tests must be taken Patients lose autonomy and no longer decide what and how much they eat NG tubes are uncomfortable and may result in the need for physical/medication

restraints Financial costs are higher Bloating, diarrhea, nausea, and/or vomiting are not prevented Blocked and leaking tubes may require multiple replacements The decision to remove a feeding tube is difficult

Pre-Active Phase of Dying

Every patient is different, but these are some signs of pre-active phase of dying: Withdrawal and less interest More difficult to wake Do not move for a long period May say they are close to death They lose complete interest in food and fluid Begin periods of pausing in their breathing Inability to heal or recover from wounds or

infections Increased swelling Some patients may experience changes in their

behavior

Active Phase of Dying

The Active Phase often lasts about three days, but can range from hours to a few days

Signs include: Patient states that he or she is going to die Confusion Severe agitation Much longer pauses in breathing Severely increased respiratory congestion Inability to swallow even fluids Decreased output of urine and stool Skin becomes pale on the face and mottled purple-blue on the

feet and legs Blood pressure drops dramatically from patient’s normal range Inability to arouse patient Patient’s body is held in rigid unchanging position

Lack of Hunger

Terminally ill patients generally do not experience hunger, and those who do, need only a small amount of food for alleviation of symptoms

Numerous studies have been recounted that disprove the assumption that death from dehydration of starvation is painful

Conclusion

Whatever the decisions are concerning food and hydration, they must be lead by the patient’s wishes and shared by the people acting as stewards of the patient’s end of life journey

The final measure of success is whether the patient’s goals have been met and the patient has been allowed to die in comfort and with dignity