Patient Advocacy

“We cannot do great things on this earth. We can only do little things with great love.”—Mother Teresa

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Patient advocates put compassion into action

by Julie Grimstad

A patient may need someone he trusts by the bedside in order to feel secure enough to go to sleep.
Visiting the sick is a work of mercy. Mercy is similar to compassion, which means “to suffer with” another, but it is more challenging than mere compassion. Mercy is putting our kindly inclinations—which we are often tempted to resist—into practice through readiness to assist. A relative or volunteer advocate who accompanies a medically vulnerable person to doctor appointments or stays with the person when hospitalized or in a nursing home contributes immeasurably to the person’s well-being.

The term “patient advocate,” as used here, means a person who strives to safeguard the welfare of a patient in the health care system. Particularly in need of advocates are persons whose lives are devalued in our society—those who are mentally or physically disabled, chronically ill, elderly, incurable, or poor.

During a visit with a doctor (in office or health care facility) the advocate’s essential role is to facilitate communication between patient and doctor. The advocate compiles a list of the patient’s symptoms and questions to be covered with the doctor and makes certain that all these are satisfactorily addressed. The advocate also takes notes, so the doctor’s advice can be reviewed later with the patient. This will prevent misunderstandings and, hopefully, ensure compliance with the doctor’s orders.

Some hospitalized patients become disoriented in unfamiliar surroundings. They may feel acutely cut off from others and betrayed by their own bodies. A familiar face helps orient the patient and prevents loneliness, isolation and despair. A patient may need someone he trusts by the bedside in order to feel secure enough to go to sleep. Rest is essential to recovery, but often difficult to get in a hospital. Particularly vulnerable patients need someone with them 24/7. The patient advocate can recruit and schedule family members, friends and volunteers to help.

Many facilities are short-staffed. This may result in overuse of tranquilizers or restraints for patients who are restless or demanding, feeding tubes for patients who can swallow but require assistance with meals, and call bells ignored when help is urgently needed. The advocate can soothe the restless patient, prevent him from pulling out tubes or falling out of bed, assist with meals, offer drinks of water, go for help in an emergency, etc.

Some hospital/nursing home personnel perceive certain patients as being of “low value” and therefore give them less care or even think they would be “better off dead.” The advocate’s competent, caring presence is apt to induce staff members to be more attentive to the patient’s needs.

Possibly the most important role the patient advocate plays is visible ally of the patient – a sign to the world that this patient is valued and that protecting this patient is a commendable act.

Patient advocates help provide essential care to vulnerable patients

by Julie Grimstad

A seriously ill or profoundly physically or mentally impaired person should not be left alone in a hospital or nursing home setting.* A patient advocate can recruit relatives, friends and volunteers; train them; and schedule their visits so there will be a caring person with the patient 24 hours a day, 7 days a week. These visitors should be able to contact the patient advocate at any time with questions or in a crisis.

When the person (patient) is cared for at home, a patient advocate can relieve the primary caregivers — often the person’s spouse and/or adult children — so they don’t “burn out.” Also, this will also give the patient a chance to interact with someone from the world outside their home, relieving their sense of social isolation.

Whatever the setting, it is essential to keep a notebook at the patient’s bedside or in a safe place. Request that everyone who spends time with the patient sign in and out, noting time and date. They should also note their observations about the patient’s general condition, appetite and needs; everything they did for the patient; names of the staff members who attended the patient; and what was done for/to the patient.

The patient advocate’s primary tasks are to ensure that the patient’s needs are being met and to protect him/her from harm. You are there to help. A calm request, if necessary, may help a staff member to be more attentive, gentle, etc. If a staff member is particularly helpful, the patient advocate may wish to write a thank you note to him/her.

Combating loneliness and despair:
Patient advocates and other visitors bring their own special abilities to patients. You can help prevent loneliness, hopelessness, depression and withdrawal. A person who feels abandoned — now that is real suffering! You have the ability to relieve that suffering. Sometimes there is nothing you can do but hold a patient’s hand. At other times, they may wish to talk. Take cues from the patient. If they want to talk about dying, listen and respond appropriately and honestly or simply assure them that you care. Praying with the patient, if it is comfortable for both of you, may “break the ice.”

Some nursing skills you may need to learn:
A word of caution: In a hospital or nursing home, always ask for help or permission from medical personnel before assisting a patient. The simplest thing, like giving a patient a drink of water, may require special skills or knowledge of the patient’s condition.

Do not let your natural discomfort deter you! If one person is to receive comfort, someone else must give it.

Conversation: Always speak to the patient in their presence, not about them. Careless conversations, even about unconscious patients, are sometimes clearly heard by the patient.

Recognizing pain and assisting in relief of pain: You can often tell if a person, even an unresponsive person, is in pain. A grimace, wrinkled brow, tense fingers, cautious breathing, moans, etc. are telltale signs. Report signs of pain to medical personnel. Most pain can be relieved with medical intervention. Sometimes a gentle back rub or leg rub or a change in position can relieve discomfort.

Nausea and Vomiting: There is usually a basin for this purpose close at hand. Turn the patient on their side so they won’t choke or aspirate. Hold the basin against their cheek and under their chin. Call for help. Antiemetic medications can control vomiting.

Attention to the patient’s appearance: Shaving a man or fixing a woman’s hair or makeup boosts morale and helps the patient feel more “normal” and comfortable.

Feeding a patient: First, ask a nurse if the patient has special needs and carefully follow any special instructions. Generally, the patient should be sitting up in a comfortable position. Take a real interest in helping the patient enjoy their meal. Give him or her the feeling that there is nothing you would rather be doing at this moment. Be patient and mindful of the person’s dignity. If they drool or food runs out the side of their mouth, simply place a napkin or towel on the patient’s chest and wipe their chin as necessary. If the person is a slow eater, try to keep the food warm. Ask for a second plate so you can put small portions on it and keep the rest of the food covered until needed.

If swallowing is difficult, give small amounts of food and frequent sips of liquids. If they choke, don’t panic. Call a nurse.

If food gets caught under dentures, remove and rinse them. Also rinse the patient’s mouth before replacing the dentures. Always help with oral hygiene after eating.

While visiting, offer the patient drinks of water or other fluids. This will help prevent dehydration, which is a real threat to every vulnerable patient’s health and life.

Bedridden and incontinent patients require extra nursing care. You can learn these skills by asking questions, assisting medical staff, and being observant. For instance, lifting and turning a patient requires training, practice and two people. Frequent lifting and turning help prevent bedsores and increase patient comfort. Helping turn the patient provides an opportunity to observe skin condition. Report any red marks as these may be the beginnings of bedsores, which often can be prevented with prompt attention and good care.

Catheter bags need to be emptied and the appearance, odor and amount of urine observed and reported. Report a bowel movement as it requires prompt cleaning for comfort and hygiene and to avoid embarrassment to the patient. Good mouth care is also very important.

There are many more things that you can learn to do if you are a patient advocate or frequent visitor. It is my hope that this article will help you to realize that YOU ARE ESSENTIAL. You can help patients live with dignity until the moment of natural death. What counts most is your loving presence, not your activity. Whatever you do outwardly, it is your concern and respect for the suffering person that matters the most.

*Tip: Before admitting a profoundly impaired person to any nursing home, interview the administrator and director of nurses. One of the most important questions is, “Are residents permitted to have visitors around the clock? May a relative or friend stay with a resident during the night?”

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