Patient Advocacy: Meeting the Special Needs of Patients

Not all patients will have similar needs. As a patient advocate, your responsibility is to tailor your services to the specific needs of your patients

A frail 81-year-old woman was counting her last few breaths. Her physician met with the family and they all agreed that comfort care was the best option for this patient. They quickly shifted her to a quiet corner of the intensive care unit (ICU) where she would not be disturbed by the regular flow of incoming and outgoing patients.

The entire family of five sons, three daughters, their husbands, wives, and several of her grandchildren had gathered at the hospital, waiting to meet her during her final moments. Although they took turns, there were still too many of them, and they were crowding the small waiting room. The nurse-advocate assigned to them by the hospital, took stock of the situation and decided to take the doctor’s permission to move the dying woman to a different, less-crowded floor of the hospital.

She personally supervised all the preparations and professionally explained to the family that this was in the best interest of the patient. They agreed and she was shifted uneventfully. The doctor visited them a couple of times in the night and saw them huddled around the matriarch, holding hands and praying for her peaceful passage. The dignity with which they let her go moved everyone who watched them to tears.

In doing all this and more, the hospital had made no big sacrifices. However by providing them with a little privacy and quiet, the nurse-advocate had given them the strength to deal with this difficult hour. After the woman passed away peacefully in her sleep early the next morning, the nurse-advocate told them to take all the time they needed to mourn her.

When they left, one member of the family quietly hugged the nurse-advocate and said “I am also a nurse at a private hospital. But today, I learnt an important lesson in patient care from you. Thank you for being our advocate.”

At times such as these, being an advocate can make a world of a difference to a patient and her family. The advocate can bend the hospital’s rigid rules, to allow an often heartless bureaucracy to put the patient first. When a loved one falls ill, finding the right doctor and getting the right care is all that matters to a patient’s family. Sick patients and family members are vulnerable and can easily get lost in the labyrinth of today’s complex medical system. Effective case management and intervention by patient-advocates can allow the hospital and doctors to tailor care to meet the family’s needs, by establishing better communication channels among the patient, her family and health care providers.

“Did you get a second opinion?” is the question people often ask a patient’s family. Arranging for a second, and if necessary, third opinion is another area where a patient-advocate can make her contribution count. Because time is of the essence when the condition is serious, patient advocates can be useful in providing joint consultations and securing speedy appointments; whereas in the case of chronic illness, patient-advocates can maximize your sense of wellness. They can monitor your progress on a regular basis, check in routinely with your doctor and ensure that the appropriate medical protocols are being followed.

Typically, a patient advocate will meet with the doctor to discuss and outline a patient’s treatment programme. She will then work with the patient and her family to make them understand the implications of the disease; explains the various treatment options; and last but not the least, identify any gaps in care and help plug those loopholes by meeting with the healthcare service providers on behalf of the patient. This can require a lot of coordination, because the healthcare world is often fragmented, and one specialist often has no clue what the other is doing. Here are a few other categories of special needs patients for advocacy efforts:

Patient-Advocates for young children

A father was playing ball with his two young children. One of the children got hurt in the head with the hard ball. She appeared to be fine, but on the third day after that incident, she started complaining of severe headaches. The alarmed parents took her to the emergency room of a local hospital, where the resident doctor even after knowing the child’s head trauma, diagnosed it as a viral infection and proceeded to send her home to rest. The parents did not feel comfortable with this advice. Their gut instinct told them that something was seriously wrong. When they politely suggested a CT scan for the child, the doctor felt insulted. Refusing to be cowed down, the parents dug their heels in and the doctor had no choice but to order the test that confirmed the parent’s worst fears - the scan showed bleeding into the brain, most likely caused by the head injury. Had the parents taken their child home to “ sleep off the virus “ that night, their child probably would never have woken up. It’s your child. Go with your parental gut instinct. Your child doesn’t have a voice, and you need to stand up and be her advocate.

Patient advocacy for the mentally-ill

Sunita Nair (45) got admitted into the inpatient/acute care psychiatric unit after a foiled suicide attempt. She was kept under observation for two days and looked clinically depressed. She had poor appetite and no interest in social interaction. In addition, she expressed ambivalence about acting on her suicidal thoughts, at times denying and at times endorsing those feelings. On the third day the patient denied suicidal ideation. The physician decided to discharge her, because she was no longer actively suicidal. However, her patient-advocate, who spent much more time with Sunita and had a much better rapport with her than the doctor, thought differently. She believed that the patient needed more time in the inpatient unit and the doctor was wise enough to listen to her reasoning. This intervention may have saved Sunita’s life.

Patient advocates and organ transplantation

Patient advocate work closely with hospitals, organ and tissue banks to identify organ donors and ensure suitable matches for terminally-ill patients in need of transplants. The decision to donate an organ or undergo a transplant is not a decision families make lightly. Patient advocates provide reassurance, resources and advice to patients at that difficult hour.

QUIZ TIME: Advocacy in Special Circumstances

Advocates can shine when your patient has a need and you speak up for them and help them get their needs addressed.

                Your patient has just had surgery. The doctor has prescribed pain-killers, but they are not taking effect and the patient is still in a lot of pain. The order says she can’t have another dose for three more hours. What do you do?

•                 Your patient is a vegetarian but receives meat on her dinner tray. What do you do?
•                 Your patient is a Muslim and must offer namaz at least five times every day. He has even carried a prayer mat to the hospital with him. What help can you offer this patient?
•                 A young mother suffers haemorrhage after giving birth to a child. She is in the ICU and requests that she be allowed to see her baby at least once, in case she dies. The hospital has a policy – they do not allow infants into the ICU. To complicate matters, the mother is so ill she can’t be taken to the nursery. What would you do?
•                 A patient is about to be discharged with a long list of prescriptions. She confides in you that she is a single, jobless woman and cannot afford some of those costly medications to get better. What would you do?

Please note that these questions don’t have any right or wrong answers. But mulling on these tricky situations and thinking of the appropriate response might help you figure out your roles and responsibilities as a patient-advocate ;  Introduce yourself to the nursing staff. They will be providing the bulk of the hands-on care to your loved one. They should be able to answer most of your questions on medication, treatments or procedures. If they can’t, they will direct you to another clinician who can. Nurses typically work on 12-hour shifts (i.e. from 6 a.m. to 6 p.m.) so find out when the shift change is and try to wait until the nurse on duty has the information she needs to answer your questions.

             

   Get to know the hospital’s discharge planner or case manager. It is their job to help with discharging your loved one and ensuring that you have all the information you need before leaving the hospital. She can provide you information about local resources, referrals to other medical professionals, when to follow up, etc. 

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients

The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

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