This month’s case featured a patient who could benefit from a palliative care consult initiated by Emergency Department clinicians. We focused on talking to patients and families about palliative care issues, and initiating this conversation before patients were admitted.

To take a deeper dive into these issues, questions for discussion focused on how to approach this conversation, how to best elicit a patient’s goals from either the patient or his or her surrogate decision makers, and how to deal with the emotions of families. In addition to two incredible experts, in this wrap up I am delighted to announce our first ever ePatient expert contributor, Meredith Hurston, who provides her perspective on this case in the podcast below.

Responses to Case 1.03

Dr. Eric Widera

Expert 1

Eric Widera, MD

Dr. Widera is the Director of the Hospice & Palliative Care Service at the San Francisco VA Medical Center and Program Director for the Geriatrics Fellowship at UCSF. He is also a co-founder of GeriPal, a Geriatrics and Palliative Care Blog, as well as ePrognosis, an online set of prognostic calculators for the elderly.

Dr. Claritza Rios

Expert 2

Claritza Rios, MD

Dr. Rios is board certified in both Internal Medicine and Emergency Medicine and currently the Associate Clinical Professor in the Division of Hospital Medicine and Palliative Care Program at the University of California, San Francisco.

Meredith Hurston

ePatient Expert

Meredith Hurston, ePatient

Meredith Hurston is a QA Technologist and Patient Safety Data Coordinator for the Department of Pathology at Johns Hopkins who has over 20 years experience advocating for her mother, who suffered from diabetes. Additionally, she owns M Squared Healthcare Consulting Agency, under which she operates The Empowered Mocha Patient Blog as an online healthcare resource for the African-American Community.

How do you initiate the discussion about palliative care with patients and families?

Individuals who work in emergency departments are frequently interacting with individuals living with serious, complex, and life-threatening illnesses. Having discussions about these illnesses, their prognosis, and options for care is difficult, in part because few of us have ever been trained on how to deliver this type of information.

A useful mnemonic to start off with is SPIKES , which gives a framework for difficult conversations.

  • S = Setup: set up the conversation by finding a quiet and private place to have the discussion. Ensure that there is enough seats for all participants, even if the discussion is at the patients bedside.
  • P = Perception: start off by asking what the family already knows about the patients condition, prognosis, and expectations regarding current treatments. A good line for this is: “What have your doctors told you about your medical situation so far?”
  • I = Invitation: ask the family about how much information they want to know. Not all family members are ready to hear difficult news and some want you to talk to someone else instead.
  • K = Knowledge: tell the family members what you understand of the patients condition and prognosis in clear, easy to understand language that avoids medical jargon. Try not to get distracted though with details, rather focus on the big picture issues, especially in a case like this.
  • E = Empathize: acknowledge emotions when you here it or see it. This can be as simple as sitting their in silence or staying “I can see that this is not something that you were hoping to hear.”
  • S = Summarize and Strategize: paraphrase what was said during the meeting, including any decisions that were made. Also make sure you talk about what will happen next.

In this case, a next step may also include getting palliative care involved, as suggested by the attending. Most individuals do not have a good idea of what palliative care is or how palliative care can help them when confronting a serious illness. Several years back, the Center to Advance Palliative Care came out with what I think is one of the best and most comprehensive definitions of palliative care, that I still use to this day:

Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

How do you clarify statements like “she did not want to be on any machines” or explain resuscitative options?

You can’t go wrong starting off any of these discussions in a place of curiosity. So, if someone does say “she did not want to be on any machines” then my next question would be “so, tell me a little about why she felt this way.” This gives you an opportunity to obtain the family members understanding of the patient’s wishes and preferences, as well as their knowledge of a particular intervention (I remember one patient who thought a breathing machine was a nasal cannula). Once it is known more about the patients values and goals, then it is reasonable to discuss specific treatments options that may meet the patient’s goals. If the goals are clear and an intervention has little chance successfully meeting them, then it would also be wise to recommend against an intervention (such as CPR in someone with a terminal illness who does not want to be on a breathing machine and wants to die at home).

This also brings up one last point that I’d like to address. When discussing interventions like CPR, it is also imperative to discuss the likelihood that the intervention will result in a particular outcome. We know from previous studies that discussing prognosis significantly influences who people make decisions. For instance, in one study, 44% of older adults desired CPR when asked about their end-of-life preferences, 44% desired CPR. That number dropped by half to 22% after learning the probability of survival. So if you do bring up CPR, put in the context of the patients illness and let them know the likelihood that it will achieve their stated goals.

(Note by SK: You can read more about this data here on Dr. Widera’s blog, GeriPal.org)

The ED can be a scary place that is fraught with distractions and is not always conducive to having conversations about goals of care, so it is important to find a place where you can talk with the family that allows for everyone to ask sit down, make introductions, listen and ask questions.

You should always start from the place the family is at. You want to ask about their understanding of the patient’s condition. A helpful phrase is “Could you tell me what you know about your mom’s condition?”

This case is interesting because the patient’s history includes what appears to be many situations in which discussions about goals of care, symptom management, and code status may have taken place. It is important to see if the family has experienced a similar situation so that you know where you are starting from and what the barriers have been in the past.

It is important to be clear about your concerns without using medical jargon.

If you believe the patient is dying it is important to say the words. Most people would think that this is an obvious and straightforward step in delivering health information. You want to be clear. However, most of us believe that we became medical professionals to fix problems. Sometimes verbalizing that someone is dying is admitting that we cannot “fix it” and this may lead to a sense of failure at the job or failing the patient, making it hard to stay away from clear, yet compassionate, communication. Remember that warning shots are helpful; “ I’m afraid I have bad news…” is a good statement to use. We in the ED have the opportunity to start a discussion that will shape the hospitalization of the patient and it is important that we make the time to do so.

I often ask family members “can you tell me more about that?” when they mention that the patient expressed wanting “no machines.” This usually leads to an anecdote regarding witnessing a family member who was in an ICU setting, which prompted a conversation among family members where they discussed their wishes in case of life limiting/changing event. If the patient wasn’t clear with the family, some helpful statements can be:

“If your mom was able to speak to us what do you think she would want us to do for her?”

“What is important to your mom?”

It is also important to ask about health care proxies, health care power of attorney, and to make sure the decision makers are identified (if not assigned by patient, different states have different have different ways of managing who makes healthcare decisions).

When families or patients say things like “do everything,” I use a statement that a few colleagues have shared:

“It sounds to me that you want us to do everything that is useful and will help your mom’s quality of life.”

This will then open up more for discussion.

Before having a meeting it is helpful to involve your ED social work team,  and it may be helpful to involve Palliative Care (PC). Because the reality of EM is that we have shift change and we are pressed for time, it is helpful to insure that there is a constant face available to the family. Call the PC Service early, even if curative measures are undertaken, as both can work together and transitioning to PC only will be more fluid. Also, patients and families will not feel abandoned by treatment team as they transition. Abandonment can be a barrier to accepting palliative measures as patients and families can feel like all the therapeutic momentum has suddenly come to a halt.

Click to listen to Meredith Hurston speak about her experience making palliative care decisions for her mother, whom she cared for for most of her adult life. Her insight provides an important perspective into the issues faced by patients and their families during palliative care discussions, as well as tips for being a better patient advocate.

This summary was produced as a qualitative, thematic review of the blog and twitter discussion created by the Ed in the ED community. All community commentary was aggregated, and the following common themes were identified in a majority of responses.

Ask The Right Questions

Starting a conversation about palliative care can be difficult. But it is often more difficult, and less likely to be successful, if participants do not fully understand each other’s perspective of the situation at hand.

Nearly all participants suggested beginning the conversation by asking how much a patient or surrogate decision maker understands about the patient’s disease and prognosis. For example, you might ask:

What do you know about what is going on with your mother?

Tell me how much you know about your mother’s condition.

How do you think your mother is doing?

This way, you can identify any mismatches in knowledge between you and the patient or family and address them before moving on. Without a shared perspective of the medical reality of the patient’s condition, it will be harder to move the discussion forward.

Next, you need to clarify the patient’s goals. Rather than asking vague questions, such as “Do you think she would want everything?,” ask questions that get to the heart of the issue: find out what type of person your patient is, what are his/her healthcare goals, what are his/her life goals—ask what is most important to him/her right now. Especially in the case of a surrogate decision maker, get to the bottom of what the patient would want this decision maker to do, not what the decision maker thinks he/she should do.

Lauren Westafer ( @LWestafer ) offers a great way to open up this part of the discussion:

As you know, your [mother] is very sick, and it sounds like [she’s] really been through a lot recently. My goal is to treat [her] to the best of my ability and in the way [she would] want to be treated. But this means different things to different people.

Keep Language Simple; Be Direct

The language healthcare providers often use to describe end of life preferences can be best explained as an alphabet soup at times: DNR, CPR, DNAR, AND. If not entirely meaningless to patients and families, these terms can introduce common misconceptions and stigma into the conversation or mask a patient’s true preferences through misunderstanding.

Discussants universally agreed it is best to use simple language to clearly describe the interventions that are available to a patient. Do not just say “CPR,” instead, talk about chest compressions, the process of resuscitation, and the chance a patient has to be “themselves” again. Do not let vague terms hang in the air—explain what a “breathing machine” is, how the process works, and what are the likely outcomes for a patient. This allows patients and families to accurately evaluate their options in light of their goals.

Lastly, it is important to emphasize that palliative care is not a de-escalation in care for the patient. Aggressive care and palliative therapies can, and do, co-exist. You must be careful to ensure patients and families do not misconceive palliative options as some form of abandonment. You can avoid this pitfall by diligently comparing potential courses of treatment back to the patient’s stated goals and compassionately addressing any concerns as they arise.

Remember, this conversation does not need to take place in one burst; use your best judgment to decide how much a family or patient can process or ask them to help let you know when they would like to take a break. Do not forget essential patient communication skills: chunking of information into palatable bits, spaced repetition, and clear delivery of information.

Set the Trajectory

Often times plans set downstairs influence the decision making upstairs. Remember that the Emergency Department care often sets the trajectory for a patient’s course of care

If a decision is made to initiate palliative care services for a patient, make sure that the admitting team is fully aware of this decision and the conversation that led to it. Be sure to pass all of the critical information you have learned about the patient’s goals and preferences to the clinicians who will be working to make those goals a reality. Otherwise, it may have all been for naught and the patient will have to hope another provider takes the time to reinitiate this conversation.

Use Your Resources

This is a tough conversation. Do not go at it alone. Get palliative care services involved early if they are available, involve appropriate spiritual leaders, and be sure to include social workers and nursing staff throughout the conversation. Make sure the patient and family have all the support they need in this difficult time.

Thanks to all participants on this case.

Check back soon for a downloadable PDF of this, and all prior, WDYS case.