One of the main goals of a patient advocate is to support grieving families in accordance with their cultural values and personal preferences
One of the most challenging tasks for patient-advocates is to deliver bad news about impending death to a family. It is never an easy task, even for the most seasoned of healthcare professionals.
Dr Sudhir Bhatia, a senior internal medicine resident receives the lung biopsy results for Tushveen Khanna, an attractive 26-year-old patient, who has her whole life ahead of her and is busy shopping for her wedding planned for next month. Khanna’s test results show she has an advanced stage of lung cancer.
Softening the Blow
Imparting bad news is an emotional experience for the advocate as well as for the patient, so take a moment to recognise this and calm yourself. You may like to say, “You do have cancer and it is a serious illness but it’s not a death sentence, especially these days. You will need a major operation followed by some treatments that will make you feel very unwell but you can get through it. You are in good hands and you have lots of people around who care about you. If the worst does come to the worst, we can control pain without knocking you out and without loss of dignity. You have a fight on and we can win. One of the most important features is your attitude. Remember that if you have any problems or want to discuss anything we are here for you.”
According to standard medical protocol, Dr Bhatia orders a PET scan and requests a consultation with a cancer specialist. An hour later, a nurse phones to inform him that the distraught patient has refused to undergo the PET scan until she sees her doctor. It suddenly strikes Dr Bhatia that no one from his team has discussed the biopsy results with the young woman and prepared her for what lies ahead. Sometimes, doctors are so focussed on “treating” abnormal test results that they forget about the patient.
When he finally gets to see her that evening, Dr Bhatia finds her sleeping, with a young man keeping a watchful vigil over her. Dr Bhatia gently wakes up the patient. “Hello, Ms. Khanna. I’m sorry to wake you, but I need to speak with you about your biopsy results. Unfortunately, it’s positive. I’m afraid it looks like you have lung cancer. We need to run another check on you, a PET scan, which would determine the spread of the cancer, but the nurse told me that you have refused it. Meanwhile, I’ve asked Dr Mukhesh Batra, who is a specialist in lung cancer to also come and examine you. Do you have any questions?”
The girl looks at him wide-eyed and scared. Her fiancé is equally bewildered. For a brief moment, they are both silent. Then finally, he speaks up, “I thought she had pneumonia. Now all of a sudden she has cancer?”
Before Dr Bhatia can respond, the poor girl bursts into tears and exclaims, “I don’t want to get any more tests done! I just want to go home!” “She is right. We just want a discharge,” says the young man.
Make it a Dialogue
“Breaking bad news is not as much a delivery as it is a dialogue between two people.”
Rabow MW, McPhee SJ
Their reaction catches Dr Bhatia off guard. Didn’t the news sink in? Didn’t the girl and her fiancé understand Rabow MW, McPhee SJ what he has just told them about the biopsy results? Suddenly he is unsure what to do next. He has three more patients to see before he can leave for dinner and home. He tries to calm down the young girl and persuades her to get the test done, but she adamantly digs her heels in. Dr Bhatia suddenly feels helpless and cannot understand why the patient is being so uncooperative. He tries to hide his frustration as he decides to leave to find the oncologist and get him to talk to his distraught patient.
No marks for guessing where things went wrong in the first place.
What is Empathy?
Empathy fosters collaborative effort. It’s the ability to sense another person’s feelings as if you were that person, while retaining your objectivity. Many experts argue that empathy is more an internal trait, a characteristic that depends on qualities intrinsic to a patient- advocate’s personality rather than a communication skill.
Is it necessary to tell the patient?
The answer is yes.
Fifty years ago, it was standard practice in India to withhold the diagnosis of advanced cancer from a patient. Often the relatives themselves pleaded with the doctor to hide the truth from the patient, because they were worried that the patient would not be able to digest the “shock.”
However, mindsets have now matured. Studies have shown that patients do want to have the correct diagnosis, even if it is bad news, because they don’t want doctors and family members to play games with them. It is important that patients are given all the medical facts, especially about their own health. They have a right to know, so that they can make informed choices about their medical, personal and legal matters.
Undoubtedly, breaking bad news to critically-ill patients can be a challenging task but for the healthcare professional, it’s an occupational hazard that comes with the territory. For a young and inexperienced physician, it can be particularly stressful, especially when the patient, as in this case, is young and there are limited prospects for recovery.
This is where a patient advocate can help. She can help all the stakeholders - the doctor, the patient and the family - in managing the medical crisis by providing truthful and accurate information about possible health outcomes, without deflating the patient’s hopes for recovery. Indeed, breaking bad news kindly and managing a patient’s expectations is one of the most important tasks that a patient advocate can discharge. The advocate has to be wise like the Roman God, Janus, and be able to see both the doctor’s perspective, as well as the patient’s, so they can both talk with each other.
After a Loved One Dies - A Patient Advocate’s Tips to What You Can You Do to Help Yourself
- Talk to your close family and friends, especially those that you feel understand.
- Don’t listen to those who say you ‘should be doing better than you are’.
- Remind yourself that it’s perfectly normal to feel sad and depressed at this difficult time in your life..
- Find ways to continue your bond with the person who has passed on. Do the things you used to do together - for example cooking, or gardening.
- Above all, be kind to yourself.
Stick to the medical facts
Patient advocates might find these tips on how to soften the blow useful...Start from what the patient understands. Begin at his level and use words that are devoid of medical jargon, so that a lay person can understand them easily.
- Try to substitute non-technical words such as “spread” for “metastasised” and “sample of tissue” for “biopsy.”
- Avoid careless bluntness (e.g., “You are at the terminal stage and unless you get prompt treatment, you are going to die.”). Even if this happens to be the crux of your message, it has to be cloaked in sensitive language.
- Hand out information in small, digestible chunks and check periodically to ensure that the patient has understood what you are saying. You may need to repeat what you say, in order to ensure that the information sinks in, so be patient.
- When the prognosis is poor, avoid phrases such as “There is nothing more we can do.” The truth is that there is always something which can be done to help the patient and even if we cannot cure, we can always relieve pain and suffering. Unkind, fatalistic pronouncements interfere with helping the patient achieve other important therapeutic goals, such as pain control and other symptom relief.
- Never abandon the patient. Always let her know that you are there for her, no matter what.
Responding to the patient’s emotional reactions is one of the most challenging tasks for an advocate. The patients’ reactions may swing wildly from silence to disbelief, crying, denial, shock, grief or plain anger. She may use you as a punching bag, so be prepared to act as an outlet for outbursts.
An empathic response calls for four kinds of interventions:
- Carefully observe and remain alert to any exaggerated display of an emotional reaction, such as stunned silence.
- If the patient appears extremely miserable, use gentle probing questions to nudge them into producing a reaction, even if it entails triggering a rush of tears. Bottled- up emotions can harm a patient, and they should feel comfortable in sharing their deepest fears and worries with you.
- Identify the reason for the emotion. If you are not sure, ask the patient.
- Finally, after you have given the patient a brief period of time to express her feelings, pledge your support and explain to her that you will stand by her side to hold her hand; and that she is not alone.
Here are a few communication techniques that you, as an advocate, can use with critically-ill patients:
- Warn her that difficult news is forthcoming. You can do this by stating, “I’m afraid the results reveal the situation is more serious than we would have hoped for...”
- The patient is your first priority. However, if she wants other people present at this time (for example, her spouse), be sure to attend to them as well.
- Sit down and speak slowly, clearly and concisely.
- Provide the information in small chunks; do not give a long lecture, which can be overwhelming for an anxious patient.
- After discussing each segment, pause to allow the patient to take in what you have stated. This is known as “chunk and check.” To ensure understanding, you must ask the patient to repeat what you have said in her own words. This is called the “teach back” or “show me” method.
- Be honest about the prognosis; do not give false hope. Be sensitive, yet direct.
- Be empathetic (e.g., “I know this is difficult for you.”)
- Don’t do all the talking. Allow the patient to ask questions and to vent.
All said and done, bad news must be delivered after carefully assessing a patient’s level of understanding, compliance, and wishes for disclosure. Speak slowly so that the patient and her family understand. Choose your words thoughtfully and try to avoid causing any unnecessary mental anguish and anxiety.
Last but not the least, a patient advocate can help to reassure the patient that her doctor will abide by three solemn commitments to her critically-ill patient:
- That every effort will be made to treat and relieve her pain and other symptoms.
- That her physician will not abandon her in this difficult hour and will be actively involved in the care process, every step of the way.
- That he will support and honour any decisions that the patient or her family makes on her behalf.