At the conclusion of this activity, participants will be able to
- Identify the communication skills required to have conversations with seriously ill patients that can move the conversation forward in a positive but meaningful way
- Describe at least one strategy for responding to the common concerns of patients and families when difficult end-of-life conversations are needed
- Describe a strategy for helping patients and families make decisions about treatment options based on goals
Physicians are typically well trained to diagnose and prescribe treatment.
If the patient has “A,” we should do “B.” So, when a patient becomes terminally ill, it is not surprising that we may jump to apply this mindset in a way that allows us to work within our comfort zone: Terminally ill means medical treatment can no longer sustain the life of this person—death is inevitable. But what can we do when our patient or the patient’s family responds to our logical conclusion by insisting, We have hope. We have faith that God will heal her. I hear what you are saying, but my mom is a fighter? Too often, at that point, the conversation ends. We back out of the room and write on the chart: “Full code. Family wants everything done.” And we continue on, and complain to our colleagues that this family just does not get it.
Unfortunately, doing “everything” does not usually change the outcome, just how the patient and family experience the outcome. We end up doing things to patients that do not end up being for them in the long run. Those patients receive costly, burdensome care, suffer unnecessarily and often die in a strange environment among strangers.
All of this happens through no fault of our own. Our medical training does not always cover these real-world scenarios. When physicians lack proper training, breaking bad news can lead to negative consequences for patients, families and physicians. In a recent study of physicians, 90 percent of respondents perceived that delivering bad news was needed, but only 40 percent felt they had the training to effectively deliver such news.1 I, myself, had only three days devoted to end-of-life care in the middle of my second year of medical school. My experience working with terminally ill patients has led me to believe that patients and families need good information as much as, if not more than, they want good news.
Certainly, there is strong evidence of the benefits of end-of-life care communication with patients with life threatening illness and with their families. Discussing a greater number of end-of-life care topics increases the likelihood of concordance between patient-reported goals of care and the goals documented within their medical records, and it increases patient satisfaction with care. For example, in a study of patients with chronic obstructive pulmonary disease (COPD), those who reported having end-of-life care discussions were significantly more likely to be very satisfied with their medical care.2 Furthermore, end-of-life care discussions also influence subsequent treatment decisions. A prospective study of more than 1,000 patients with cancer found that end-of-life care discussions before the last 30 days of life were significantly associated with fewer aggressive medical interventions.3 Although aggressive medical interventions may be appropriate for, and preferred by, some individuals, patients’ quality of life and relatives’ bereavement adjustment are reported as significantly better when patients receive fewer aggressive medical treatments toward the end of life.4
Rather than continue the practice of pretending that medicine can reverse what we know is inevitable, we need to develop skills that provide compassion and guidance to patients and families facing life-limiting illnesses. Perhaps learning some responses to common statements by patients and families can help us navigate the perils associated with providing appropriate, patient-centered end-of-life care.
How To Begin The Conversation
I start every difficult conversation with the same introduction: “I have difficult things to tell you. It will not help you or your family member if I do not tell you the truth.” This gives me some room in the conversation to go deeper when things get emotional or difficult for the patient and family. Many times, the response I receive is: “Please. We want the truth.”
Before giving bad news to a patient, you may need to take a few minutes to prepare. It makes sense to think through what you are going to say to the patient in advance. You should also consider where the conversation will take place and who should be present. The conversation should be in a quiet location that is free of distractions, interruptions and ringing cell phones. The message should be delivered with empathy and respect, and in language that is understandable to the patient, free of medical jargon and technical terminology. It may also be helpful to brainstorm additional resources that you can offer the patient, such as a social worker or support group.5
How To Respond
Let’s explore some of the common phrases that often stump providers when difficult conversations are needed.
Please do everything possible. This response opens the door to a discussion regarding the patient or family expectations.
You might say: “I reviewed the records, and in this situation, everything is being done. I am concerned at this time that the burdens of everything we are doing are greater than any benefit to you or your family members. I am very concerned about prolonging unnecessary suffering. What more do you think can be done?”
Now you have the opportunity to sit down and have an honest conversation.
We have hope. The underlying meaning to this statement really is: “If we have hope, she lives; if we don’t have hope, she dies.”
You might say: “Let’s talk about what you are hoping for. Do you hope she is not in pain? That she knows she is loved? That she is not suffering? That she lived the life she wanted? Do you hope to pass away peacefully with family nearby?”
This conversation can help grow a new definition of hope.
God will heal. A person’s faith or religion is an opportunity, not an obstacle when discussing end-of-life care. When people say this, they are essentially acknowledging that recovery is beyond the help of medicine—that a miracle is needed to change the outcome.
You might say: “I am so glad you are a family of faith. People without faith do not understand that something greater than us controls the big picture.”
Embrace their faith, and use it to help them make good decisions. Invite their minister, priest, rabbi, imam or spiritual leader to be a part of the discussion.
Mom is a fighter; she would never give up. Being a fighter is an emotional, mental and spiritual state. But when the prognosis is terminal beyond a doubt, it is important to ask what one is fighting for.
You might say: “Regardless of how mentally tough she is, her body is now failing. Sheer will to survive will not prevent her life from coming to an end. I would love to tell you that all of this can be fixed, but it cannot.” If the family persists, add: “Despite all we have to offer, her body will continue to fail. If we continue to treat her medically, we will not change the outcome—just how she and all of you experience the outcome. As a doctor and more importantly, as a human being, I do not want her to suffer for no particular gain.”
How can you let him to starve to death? At the end of life, everyone will eat less and sleep more. It is the way our bodies are designed to shut down. Interrupting the natural process could add suffering and symptoms that would not otherwise have been present. If patients or families request artificial nutrition and hydration in advanced illness, they do not understand the negative effects of that request. It is important to explain in a direct and simple manner.
You might say: “Although it seems more compassionate to feed and hydrate a person at the end of life, it is, in fact, rather cruel. The body needs to slowly shut down, and feeding can cause aspiration and vomiting, and agitation. It is much kinder to withhold food at this time.”
Or, if you do agree to feeding, you as the physician must define a goal and a period of time to achieve that goal. For instance, what is the family hoping to achieve by placing a feeding tube or starting total parenteral nutrition (TPN) in a patient with advanced cancer? If that goal is not achieved within a certain number of weeks, be up front about the next step.
Honest, truthful, evidence-based conversation is far more helpful than blindly ordering intervention simply to avoid upsetting the family.
Do not be afraid of being silent with patients and families when you are discussing serious issues. This skill is difficult to develop. To soothe our own discomfort, it is tempting to interrupt silent pauses with more information. But in doing so, we lose the opportunity for the patient and the family to process the news, to collect their thoughts, to construct their questions, to give grief its due. Sometimes, it is best to say nothing.
How To Set Goals With The Terminally III
After responding to these initial pleas for more time, more intervention, more hope, it’s time to ask the patient and family to talk about goals going forward. Many times, the retort is: “Well, doc, my goal is to live as long as I can.” How true—and certainly, that is your goal for the patient too. However, every life comes to a natural end, and when that moment nears, what would be important to the patient and family? To be home? To attend an important event? To gather with family and friends? What steps are necessary to achieve these goals? When the family looks back at this time 6 or 12 months or years after the patient dies, they need to know they made good decisions for the patient.
Make It A Team Effort
Be very careful to base all treatment decisions and options on the patient’s stated goals. All physicians and caregivers should coordinate their key prognosis points to avoid giving the patient mixed messages.
Sadly, I had a single mother once with end-stage liver disease and renal failure. She knew she was dying and would not live long. She was not a transplant candidate for a variety of reasons. Her daughter was 16, and in the fall school play. Her mother’s goal was to be at home, spend time with her daughter and go to her rehearsals, in case she did not live long enough to see the play. Through a few family meetings, her mom, brothers, sisters, daughter and cousins all embraced her goal, and were determined to make it happen. The plan was communicated to the medical team, hospice was called and efforts to get her home were in the works. A doctor came in, not on board with the plan, met with the family, and urged them not to just “give up.” Why not just transfer to a transplant center, get a full evaluation and then decide? It had been established that she was not a candidate for transplant, but there may be other things that could be offered. The plan for going home was derailed, and she was transferred to a university 75 miles from home, where she died three weeks later—away from her daughter, away from home and not meeting her goals.
Who Knows Best?
Regardless of how you develop your skills in having these conversations, you will come across that patient or family who makes it difficult to expand the dialogue in a meaningful way. When that happens (and it will), always support the decision they make, but do not be afraid to express what concerns you about their decision.
I am not a fan of the statement “in my experience.” It is used too often by too many in medicine, and leads to care that is not always fact- or evidence-based. I recently had a patient tell me that a doctor told her that “in her experience, she had many elderly patients do well after a Whipple procedure, so the patient should definitely give it a go.” The patient was 79, had a creatinine of 3.8 and a cardiomyopathy and severely limited mobility due to COPD and osteoarthritis. I do not blame the doctor. However, in her desire to give good news, she failed to give good information.
Ultimately, you should never talk a patient into or out of a particular intervention. Medicine no longer follows a paternalistic pattern. We do not always know what is “best.” In addition, you should not blindly agree to the patient’s or family’s plan without a dialogue about the benefits and burdens of what is being requested. Speak your truth when you believe any of the following:
- The patient would not be helped by that particular intervention.
- The burden would be greater than the benefit.
- The suffering would be increased without meeting a specific goal.
Use your training, your knowledge and experience to guide your terminally ill patients and their families. Too many times, practitioners are afraid to express what they are thinking, in an attempt to placate the patient and family. At these times, patients end up getting burdensome care, not consistent with treatment goals, not evidence-based, not helpful and potentially, harmful in the end.
If you recognize that you are not good at having difficult end-of-life discussions, you are not alone. Don’t be afraid to seek out additional resources and ask for help. We all learned at some point during our training how to deliver a baby. In an emergency, we could probably do it. However, when confronted with a pregnant patient, we would refer her to our OB/GYN colleagues. It is the same here. Know who among your colleagues has developed this skill set, likely someone with training in hospice and palliative care, and refer the patient or family to that colleague.
As you strive to guide your patients with advanced illnesses to appropriate end-of-life care, remember that as much as you owe them all of your skill and knowledge, you also owe them a chance at a peaceful and meaningful death.
Marianne Holler, MSW, DO, FACOI, FAAHPM, is Chief Medical Officer at VNA Health Group in Holmdel, New Jersey.