iCONSENT
CONSIDER THIS POEM STORY BY DYLAN THOMAS
“Do Not Go Gentle Into That Good Night”
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Questions for reflection or group discussion
What is a “good” death?
How can we navigate cases where a family member is saying that a procedure should be done for their loved one but the patient doesn’t seem to want it?
What can we do to help a patient or family cope with a terminal illness?
NAVIGATING DIFFICULT PERI-PROCEDURAL CONVERSATIONS
Some conversations with patients and families can be particularly challenging to navigate thoughtfully. These include conversations with patients or family members who are upset and/or angry about their care, requests for potentially inappropriate procedures (futility), delivering bad news, and managing code status in the peri-procedural setting.
Other challenging situations such as managing complications, VIP care, and conflicts of interest will be discussed in the next module.
UPSET / ANGRY PATIENTS AND FAMILIES
Dealing with an illness, pain, and discomfort personally or supporting a loved one is challenging, particularly when unexpected or poor outcomes occur leading to frustration and distrust. Sometime this frustration and anger is more related to navigating healthcare in terms of access, follow up, or insurance coverage and billing. Whether directly relate to care you provided or displaced, navigating these conversations can be challenging.
Rather than avoiding this tension when it arises it can be helpful to lean into the tension, name it, and try to understand their perspective. “I think anyone would be upset if this happened to them” or “I can only imagine what you’re going through and how frustrating this has been, what do you think caused this or could be done differently in the future?” Other helpful approaches include sitting down with open body language and slowing down the cadence of the conversation by remaining silent and letting them say what they have to say before responding calm voice and tone. The body language signals that you are not trying to rush off to your next task and are ready to listen to them. Listening validates them and slowing down the cadence helps defuse some of the tension.
Once you better understand the situation and their perspective, you can help redirect the focus on where to go from here and what you both can do about it. You can only do this well once you’ve established rapport by listening and validating their perspective. Be sure to be specific and not over promise as this may exacerbate the initial frustration and distrust. “Unfortunately, there is not much I can do right now about X, but I can help with Y…” “I wish I could change what has happened, but going forward I will…”
FUTILITY AND REQUESTS FOR POTENTIALLY INAPPROPRIATE PROCEDURES
Minimally invasive image guided procedures can be performed in critically ill patients who otherwise could not tolerate a more invasive intervention. At times, these minimally invasive. interventions can be lifesaving or palliative reliving pain and suffering near the end of life. Other times, the procedure seems more heroic with little chance of benefit relative to the risks. This can be distressing and raise concerns of futility.
Clearly futile interventions should not be performed even if requested. Clinicians also have autonomy and should not feel compelled to perform a futile intervention. This is supported both ethically and legally as it exposes someone to potential harm without benefit. There is some nuance here in cases where the clinical teams believe an intervention is futile and the patient or family disagree. This multisociety position statement provides a suggested approach.
The more challenging cases are those which are not clearly futile but may be. As such, the position statement mentioned above recommends the term “potentially inappropriate” to describe these procedures requests to differentiate them from interventions that are clearly futile. These cases are challenging because it is difficult to know prospectively whether the intervention is futile or not and because perceptions of meaningful benefit, value, and risk can vary substantially from patient to patient. These cases are also challenging when one believes the intervention is likely futile but they feel compelled to perform the procedure due cultural factors such as referral patterns. This can be quite morally distressing and has been shown to be associated with burnout.
One of the best supported approaches to these cases is to use advance care planning to determine whether the intervention aligns with the patient’s goals of care. Advance care planning entails discussing and documenting the patient’s (and other decision makers’) goals and values related to their care. Doing so has been shown to improve patient and family satisfaction while reducing anxiety and costs. When you receive a request for a potentially inappropriate procedure, it is best to first ask the referring clinician about the goals of care. If this conversation has not occurred recently, it is worth facilitating it to ensure the potential procedure aligns with the patient’s values and goals. Ideally, this would be done by a clinician with a pre-existing relationship and good rapport with the patient. Palliative care specialists can also be an invaluable resource for facilitating these conversations and helping patients balance their preferences and concerns. Alternatively, the interventionalist can incorporate advance care planning into their consent conversation.
Much like the iCONSENT approach to consent, it is good to start with choosing on appropriate setting and asking what their understanding of their current health issues is. It is also important in these conversations to be transparent, realistic, and not lessen the seriousness of their condition. You should discuss the option of no intervention as patients can feel compelled to keep undergoing invasive procedures and suffering to not give up or stop fighting. It can be helpful to normalize this option saying things like “You know, some people with advanced cancer like you choose not to undergo additional interventions and focus on comfort. We can talk about that too if you would like.” This tends to open up the conversation, allowing you to further explore their goals of care.
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difficult conversation
PERI-PROCEDURAL CODE STATUS
Some patients referred for a procedure have Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders in place. Historically proceduralists and anesthesiologists have required suspension of DNR/DNI status to undergo a procedure to have the option to fully resuscitate them if something unexpected was to happen intraprocedurally. However, the American College of Surgeons and American Society of Anesthesiologists have since recommended against required suspension. Rather, they recommend that code status should be rediscussed when considering a procedure for a patient with DNR/DNI orders in place. Unfortunately, many practices still require suspension of DNR/DNI orders.
Many procedures performed near the end of life are palliative and/or have minimal risks. It is unfair to require a patient/family to choose between having such a procedure and maintaining their desire not to have intubation or CPR. This is NOT the case for more invasive interventions that may require intubation to be performed safely or have a high risk of propagating cardiac arrest. Likewise, a more invasive, high-risk procedure should not be performed with DNR/DNI orders in place as a means of hastening death.
Rediscussion of code status can be incorporated into consent conversations without requiring substantially more time or effort. “I noticed in your chart that you have a DNR and DNI order in place meaning that you would not want us to perform CPR if your heart were to stop or putting a breathing tube down your throat if you couldn’t breathe on your own, is that correct?... Causing either of those to happen during this procedure would be extremely rare, so some people choose to keep those DNR and DNI orders in place during the procedure while others choose to pause them and allow us to resuscitate you if something unexpected happen during the procedure, which would you prefer?”
If appropriate and a patient chooses to keep DNR/DNI orders in place during a procedure, it is important to incorporate this into the timeout discussion prior to the procedure to ensure all team members are aware. It can be very distressing to have a patient die and not intervene especially if you feel that you could have saved them. Mentioning the patient’s preferences ahead of time helps people anticipate this outcome. It is also helpful to at least briefly debrief with your team afterwards if something very unexpected occurs resulting in a bad outcome during a procedure regardless of code status.
SPIKES AND CHUNK AND CHECK
Two helpful approaches to challenging conversations are SPIKES and chunk and check. These are particularly helpful for conversations where you are disclosing bad news. SPIKES is a pneumonic/framework specifically designed for disclosure of bad news.
S - Setting: arrange for privacy, involve family, sit down with patient, remove physical barriers between physician and patient
P - Perception: use open-ended questions to determine how the patient perceives the medical situation (e.g. “What is your understanding of the reasons we did the MRI?”)
I - Invitation: determine patient’s desire for information about diagnosis, prognosis, and details of illness, including how they would like the information to be provided (e.g. “ Would you like me to give you all the information or sketch out the results and spend more time discussing the treatment plan?”)
K - Knowledge: disclose the news with a warning that bad news is coming (“I’m sorry to tell you that…”), use nontechnical words, avoid excessive bluntness, give information in small chunks and check understanding periodically, avoid phrases that imply abandonment of effort in the case of poor prognosis (“There is nothing more that we can do for you”)
E - Emotions: respond to the patient’s emotions, identify emotion and the reason for the emotion, continue to make empathic responses as the emotion is cleared
S - Strategy/Summary: ask patient if they would like to discuss treatment plan, present treatment options.
Chunk and check is less specific to disclosure of bad news and can also be helpful during consent conversations and goals of care discussions. This involves presenting information in small chunks and checking for understanding between each chunk of information. For example, you may discuss cirrhosis and portal hypertension with a patients referred for a TIPS and say “Does that makes sense? Do you have any questions before I move onto describing the procedure?” Or you maybe discuss the option of not placing a third biliary drain for malignant biliary obstruction and check for understanding and thoughts before discussing other options.
Chunk and check is helpful because it is easy for patients and their family to feel overwhelmed in healthcare particularly for those with lower health literacy or other communication barriers. Launching into a 5-minute canned description of TIPS and your plan is unlikely stick with a patient or invite their input and discussion. Breaking down the conversation into chunks often does not make the conversation take substantially longer but dramatically increases their understanding and often helps build much better rapport.