- critically ill
in such a state of health as to need ongoing medical and nursing attention, and likely to rely on medical technologies.
- grief
the sorrowful feelings experienced when our loved ones suffer or die.
As ICU patients are frequently too ill to communicate, ICU treatment involves making many clinical decisions without direct communication with the patients themselves. As these decisions often have to be made within significant time constraints, it is important to have a method to accurately and sensitively communicate with patients (if possible), their families, and other healthcare professionals.
Family meetings can be made more effective by simple measures, including arranging the physical environment, adopting a structured communication approach to counter-balance the at times unpredictable aspects of difficult discussions, inviting the right people, minimising interruptions, and using silence and time judiciously to ensure everyone remains ‘on the same page’.
- family meetings
meetings between clinicians and family members of the patient. These meetings take place when the patient is not able (due to being unconscious or delirious) to contribute to discussions about the patient’s future care plans.
Having a critically ill family member in the ICU is highly stressful and difficult, even when the patient survives. Families commonly experience several stages of grief, as described by Kübler-Ross (Kübler-Ross, 1969). These stages tend to shape the ways in which family members communicate, their ability to comprehend or retain information given to them, and the communication styles to which they respond best.
Communication with patients and staff is a core skill for everyone who works in the ICU. Every day, there are various challenges, not least because ICU patients are always very ill. These challenges range from negotiating plans under difficult circumstances with patients and families, to the less obvious but equally important challenge of navigating relationships with members of the multidisciplinary healthcare team.
- multidisciplinary healthcare team
a team that is made up of members whose professional backgrounds are different – for example, a team made up of doctors from different specialties, or a team consisting of a nurse, allied health professional, doctor and social worker.
The ICU is a highly emotionally charged environment, primed for miscommunication. However, with careful planning and a structured approach, conflict can generally be avoided. The practice example cases contained in this chapter outline common ICU communication themes by giving instances of good and poor communication in the context of care of the critically ill.
We describe a standardised approach to family meetings to manage the practical and emotional dimensions of difficult discussions. We also discuss the framing of grief experienced by family members in terms of the Kübler-Ross model. Finally, we outline a number of ways to avoid family and patient discussion going poorly.
The process of discussing the situation and options available to critically ill patients usually involves meetings with families. Such meetings can be informal or formal, and may be few or many. Where possible it is important to communicate progress and treatment options to the patient but, as patients are frequently unable to communicate, this may not be possible. It is then necessary to conduct discussions with family members who act as surrogate decision-makers for the patient. Using a family member as a surrogate decision-maker may be extraordinarily difficult for families. This is particularly true when they are unsure of the patient’s treatment preferences, or when they may harbour guilt or anger over the patient’s illness situation (Curtis & Rubenfeld, 2001).
Introduction
By its very nature, the ICU is a place where patients are often very ill, and may die or develop severe disability. For patients and families alike, being admitted to ICU is literally life changing. In order to deliver the best care, and to avoid potentially negative experiences, clear and effective communication should be a high priority for ICU clinicians. Communication is a learned skill and one in which we should be mentored (Iedema et al., 2004).
Communication between patients and staff in ICU is a core part of the job of all healthcare professionals working in this area. On a daily basis, ICU staff encounter communication challenges, including both doctor–nurse–patient–family relationships and communication with healthcare professionals from other disciplines who have their patients admitted to ICU.
The nature and severity of illnesses and the types of treatments provided in the ICU make communication in this environment different from communication in other medical environments. In ICU, clinicians face patients’ limited ability to communicate, they are in a busy physical environment, there is the urgency of ICU care, and there is a lot of involvement from other specialties and disciplines from outside the ICU.
Patients’ limited ability to communicate
Due to many factors, including severity of illness, delirium, sedating medications or breathing tubes, the patient is unlikely to be able to meaningfully participate in conversations or decision-making regarding their health or treatment choices. Communication therefore frequently involves surrogate decision-makers and may not directly involve the patient at all. For the same reasons, the patient may never have the opportunity to express their wishes or treatment goals. Decisions must be made by others, guided by assumed knowledge of ‘what the patient would have wanted’, and what is medically appropriate.
Busy physical environment
The ICU is an environment characterised by noise, light and activity 24 hours a day. Cubicles may be separated only by curtains, reducing privacy and allowing nearby conversations to be heard easily. The ICU staff may also have multiple competing demands on their time, including family meetings, assessing new patients, urgent procedures and unexpected emergencies. The ICU is thus not conducive to calm and private communication, and a deliberate effort needs to be made to try to alleviate this.
Urgency of care
In the setting where there is frequent rapid deterioration in the patient’s clinical state (for example, bleeding requiring an operation), life-changing decisions must be taken very rapidly, with little time for comprehensive communication with families or outside staff.
Multidisciplinary involvement
In the ICU there are often a larger number of interested parties to any decision or conversation than would be usual in the general ward setting. These may include ICU medical and nursing staff, ‘patient unit’ medical staff (that is, medical staff from specialties where the patient might have been originally admitted, before becoming so ill as to require transition into the ICU), allied health staff, social workers, and family members who may wish to be involved in serious decision-making. ‘Multi-party negotiations’ require different communication techniques from the ‘two-way’ communication between the parent unit and the patient in the general wards or outpatient clinics.
All of these factors – patients’ limited ability to communicate, busy physical environment, the urgency of care, and multidisciplinary involvement – mean that consideration and attention to every aspect of communication is needed to avoid misunderstandings, conflict, and potentially poorer outcomes for patients. This can be achieved by careful planning of family meetings, helping grieving families by understanding the Kübler-Ross grief stages, and addressing the potential for staff miscommunication both within and outside the ICU.
The five stages of grief proposed by Kübler-Ross are denial, anger, bargaining, depression and acceptance (Kübler-Ross, 1969). These affect families as well as patients, and strategies can be developed to guide the family through their grieving process. Although the stages are not meant to be an exhaustive list of emotions, they may encompass the main grief journey experienced by most family members during and after a catastrophic illness. Importantly, the stages may not be sequential and in fact may not be experienced by all people. There is dispute as to whether these stages apply to families of loved ones (Freidman & James, 2008), but it is a useful framework to begin our understanding of grief.
- depression
a doubting of self-worth, and experiencing feelings of dejection and despondency.
- acceptance
resigning yourself to an outcome, situation or decision.
The practice example cases contained in this chapter outline common issues faced by clinicians working in ICU, with instances of good and poor communication, in the context of care of the critically ill.
You are called to the emergency department to see Mr Bill James, a 78-year-old man with multiple co-morbidities who now has a perforated bowel. Even in a healthy person this condition is associated with considerable morbidity, but with his extensive medical history there are only limited options available. The surgical and anaesthetic teams are reluctant to operate as they feel this would be futile. Mr James is too unwell to participate in the meeting, so you decide to discuss the treatment options and appropriateness of intensive care support with his wife and daughter.
DOCTOR: Hi, my name is Dr Francis. I am one of the doctors from the intensive care team, and this is Brendan, one of the nurses caring for Mr James. Before we start, is it possible to go round and introduce yourselves?
WIFE: Hi I’m Eileen, Bill’s wife.
DAUGHTER: And I’m Lucy, Bill’s my dad.
DOCTOR: Thanks for that, Eileen and Lucy. As I mentioned, I am one of the doctors from intensive care. We have been asked to see Bill, because as you probably realise, he is very unwell.
WIFE: Thank you. Yes, we realise that he is really sick. I am really concerned about him. We can’t even understand what he is saying to us right now.
DOCTOR: Yes, we are very worried about him too. Do you think you could tell me a little about Bill and about what you understand of his current situation?
WIFE: Well, he’s been unwell for some time with the diabetes, and he was in hospital last month with a heart attack. He’s only been home a week, and then he got so sick last night. He had really bad stomach pain. I didn’t know what to do.
[Pause]
DOCTOR: (nodding) You did the right thing by bringing him in.
DAUGHTER: Since his first heart attack two years ago, he really hasn’t been happy with his life. He can’t go out into the garden, he can’t take his dog out.
WIFE: Yes, he’s really not satisfied with what his life is like these days. It’s so sad because he used to be so active, and now he can’t do anything that he loves. He’s had enough.
[Wife begins crying, consoled by daughter, two minutes’ silence]
DOCTOR: I’m sorry he is so unwell. You obviously care for him a great deal.
[Pause, two minutes]
DAUGHTER: So what’s going to happen with him now?
DOCTOR: Well, as I mentioned before, Bill is incredibly ill. From the scans and the blood tests, it appears that he has a hole in his bowel, and this is leaking poo into his abdomen. Unfortunately, because of this, his kidneys have shut down and his heart is needing a lot of medication to keep his blood pressure up.
WIFE: Are they wanting to do an operation for the bowel?
DOCTOR: At this stage, there are very limited treatment options, and I need to talk to you about them. More importantly, we need to discuss what Bill would want under these circumstances.
WIFE: I don’t want him to go through another operation. He wouldn’t want that. He couldn’t face the recovery.
DAUGHTER: Yes, I know it sounds terrible, it sounds like we don’t love him, but we just don’t want him to suffer. He wouldn’t want surgery.
[Pause]
DOCTOR: No. And I can assure you we do not want him to suffer either.
WIFE: Please just keep him comfortable. Please make sure he is not in pain.
DOCTOR: I can assure you he will not suffer. From our conversation, it is clear to me that you understand what Bill’s wishes would be. It is clear that he would not want an operation, and the surgeons and I feel that an operation is not the best thing for him. We won’t do any operation. We will keep Bill comfortable with as much pain relief as he needs, and make sure he is not suffering at the end of his life.
WIFE: (sobbing) Thank you.
[Pause]
DOCTOR: Do you have any questions or concerns about what we have spoken about?
- intensive care
an area of the hospital where patients who are critically ill are treated, and therefore needing ongoing attention and often several technologies to keep them alive.
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