Because of nursing research, doctors and nurses taking care of a dying patient in an intensive care unit (ICU) can communicate better with family members. This communication includes taking the time to listen to concerns and answer questions. As a result, the family members may feel less stress and find it easier to take part in making decisions on care – even when the decision involves whether to continue or withdraw life support measures. 

End-of-life care in the ICU

Patients in an ICU are usually very sick or seriously injured. Many are unconscious or incapacitated and most require technology to support life. They are attached to monitors to measure their heart rate, breathing, blood pressure and other vital signs. They often have various pumps and machines to deliver fluids, food, and medications. They may need a mechanical ventilator to breathe for them. Their care involves constant vigilance by skilled nurses, doctors, therapists, and other clinicians.  

Despite this high level of care, the outcome is very uncertain. The technology of the ICU supports the basic processes of life. However, if the patient’s condition worsens, this technology may only prolong the dying process. Roughly half of the patients who die in the hospital have spent time in an ICU. Overall in the U.S., one in five deaths occurs during or shortly after an ICU stay.

Most clinicians working in an ICU are focused on saving lives. They may be less comfortable in dealing with death. Some may even feel that death indicates a failure on their part, rather than a natural or inevitable outcome of the disease or injury. Thus, ICU clinicians may not always address the end-of-life care needs of dying patients and their families.

Most deaths that occur in the ICU involve a decision to withhold or withdraw life support measures, such as a ventilator. However, few ICU patients are able to indicate their wishes at this time. Thus, the decision often rests in the hands of family members and clinicians.

Family anxiety and stress in the ICU

When a loved one is in an ICU, family members are typically very anxious, and under great stress. The ICU is an unfamiliar and frightening environment. It is often very busy and noisy. A patient’s condition can change suddenly. Family members may struggle to make sense of all that is going on.  

The family needs information and support. The doctors and nurses in the ICU can provide updates on the condition of the patient and explain available options. When a decision on the proper course of care is needed, they can encourage family members to contribute. Even when a critically ill patient can take part in these discussions, clinicians often still seek input from the family members.

Clear communication at this sensitive time is very important. To family members, the communication skills of ICU clinicians are often as important as their clinical skills.

Family conferences: a way to help families understand and cope

After a critically ill patient is admitted to the ICU, the ICU clinicians or the family may request a family conference. This conference can bring the clinicians and family members together, and usually takes place in a quiet room outside of the busy ICU. ICU nurses play a vital role in these conferences because of their direct involvement in care, as well as insights gained from informal conversations with the patient and family at the bedside.

Dr. J. Randall Curtis (pictured, right), an intensive care physician, has studied these family conferences. From his research and experience, he has found that the most effective family conferences follow a similar pattern:

• An introduction of all participants, allowing the clinicians and family members to meet and know each other by name.        
• An opportunity for family members to let clinicians know what their current understanding is of the situation or what questions they have.
• An update on the patient’s condition and prognosis, and explanation of the options for care, usually by the physician.
• A dialogue between clinicians and family, aimed at helping the clinicians know and understand the patient as a person and what was important to him or her.        
• A discussion of any decisions that need to be made, the options that are available, and whether or how those options might achieve the goals that are important to the patient.
• Time for follow-up discussion, even allowing for silence as the family members process the information and form questions.         
• A closing summary that recaps what was discussed, restating any decisions made.

By providing the opportunity for dialogue, these conferences can help family members understand the patient’s condition and cope with the stress.

Spiritual care for patients and families

Spirituality is a very common human characteristic that can take many forms. It can serve to help some people find meaning or purpose in life events. When a loved one is seriously ill, family members often wish to seek guidance from a pastoral care provider or spiritual counselor, and may take comfort in their spiritual beliefs and rituals.

The ICU nurse is in a good position to assess the spiritual needs of the patient and family. This assessment is often informal. It may take place during family conferences, as well as during more private times such as bedside conversations. This assessment often needs to be on-going, because the family’s spiritual outlook may change as the condition of the patient changes. When appropriate, the nurse can make a referral for pastoral or spiritual care services.

Dr. Curtis has found that family members report feeling more supported in the ICU and have greater satisfaction with decision-making when their spiritual needs are addressed and a spiritual counselor is available, particularly in the last days of the patient’s life.

Decisions at the end of life

When the ICU clinicians believe that recovery of the patient is no longer possible, and that continuing care is only prolonging the dying process, they may hold a family conference to discuss withholding or withdrawing life-sustaining treatments. The clinicians should make clear that this is a serious step. However, it does not mean they are abandoning the patient or stopping all care. Rather, the focus shifts to providing palliative care. The goals of palliative care are to promote the comfort of the patient and ease distressing symptoms such as pain or breathing difficulties.

Family members often want reassurance that their loved one will not suffer. They also often need to discuss the actual process of the death. For example, they may want to know the timing of an event such as removal from a mechanical ventilator, so that someone can be with the patient.

Inclusion of the family members in these discussions is called shared decision-making. When shared decision-making is done well, it can benefit the family by decreasing stress and improving confidence that the decision is in the best interests of the patient.

However, studies by Dr. Curtis indicate that shared decision-making between clinicians and family members in the ICU is often incomplete. A study that reviewed recordings of family conferences in these end-of-life situations found that clinicians tended to dominate the conversations. As a result, they may miss opportunities to help family members in three important ways: (1) failure to listen, in which clinicians did not answer questions or clarify family concerns, (2) failure to acknowledge emotions, in which the clinicians did not offer emotional support or acknowledge and support grief, and (3) failure to explain the principles of palliative care, in which clinicians did not fully address important points about the features of shared decision-making and describe the clinicians’ plan to support the patient and family throughout the dying and bereavement process.

Dr. Curtis has also found that family members expressed more satisfaction with these end-of-life conferences when the family is given more time to talk and when allowed to raise their questions and concerns.

The VALUE approach

In a large study involving several ICUs, Dr. Curtis and a team of researchers evaluated one approach for clinicians to use to aid communication during an end-of-life family conference, called VALUE:

• Value what the family members say.
• Acknowledge their emotions.
• Listen.
• Understand the patient as a person.
• Elicit questions.  

Over 100 family members of critically ill patients participated in this study. When the patient appeared near death, the ICU physician called a family conference to decide on the continuation or withdrawal of life-sustaining measures. In half of the cases, the physician conducted the conference in accordance with the VALUE approach, and also provided the family with a brochure on bereavement. In the other half, the family conference took place according to the customary practice of the physician. All conferences resulted in a decision to forgo further life-sustaining treatment.

The VALUE conferences tended to last longer and allow the family members more time to speak, and the patient’s nurse was more likely to be involved, compared to the customary-practice conferences. As a result, almost all family members in the VALUE group reported being able to adequately express their emotions to the ICU clinicians, as compared to only three-quarters of family members in the customary-practice group. In addition, from interviews conducted three months after the death of the patient, family members in the VALUE group had lower long-term stress, anxiety, and depression than those in the customary-practice group.

The impact of good communication

When a loved one is dying in the ICU, family members are uncertain and distraught. Research supported by NINR has shown many ways in which clinicians – nurses and physicians – can better work with patients and family members. Being aware of both the communication and the spiritual needs of the family can decrease family stress and enhance end-of-life decision-making. Making use of an evidence-based approach, such as VALUE, can help family members express their views and emotions, accept a more realistic goal of care, and improve their long-term psychological outcomes.

Improving end-of-life care is important for ICU clinicians as well. A survey of nurses whose patients died in the ICU, conducted by Dr. Curtis and his team, found that most felt that the highest quality of dying and death occurred for those who were not connected to life support equipment and who had someone with them at the time of death. 

“Our research team has focused on improving the quality of care delivered to critically ill patients and their family members,” said Dr. Curtis. He added, “The desire for information and emotional support is a common theme among all ICU families, regardless of whether the patient lives or dies. In fact, clinician-family communication is possibly the most important factor driving family satisfaction in the ICU.”

Ongoing studies being conducted by Dr. Curtis and funded by NINR include the use of a “communication facilitator” in the ICU to help ICU clinicians meet families’ needs for communication and also testing an educational skills-building program to help clinicians improve their communication skills during sensitive end-of-life cases, with the goal of improving end-of-life care for all.

NINR funding support:
National Institute of Nursing Research grants: R01 NR05226, R01 NR008016, R01 NR09987   

Other funding sources include:
National Cancer Institute
National Heart Lung and Blood Institute
Robert Wood Johnson Foundation
American Lung Association

References:

Curtis, J. R. (2004). Communicating about end-of-life care with patients and families in the intensive care unit. Critical Care Clinics, 20, 363-380.

Curtis, J. R., Engelberg, R. A. (2011). What is the “right” intensity of care at the end of life and how do we get there? Annals of Internal Medicine, 154, 283-4.

Curtis, J. R., Engelberg, R. A., Wenrich, M. D., Nielsen, E. L., Shannon, S. E., Treece, P. D., Tonelli, M. R., Patrick, D. L., Robins, L. S., McGrath, B. B., Rubenfeld, G. D. (2002). Studying communication about end-of-life care during the ICU family conference: development of a framework. Journal of Critical Care, 17, 147-160.

Curtis, J. R., Engelberg, R. A., Wenrich, M. D., Shannon, S. E., Treece, P. D., Rubenfeld, G. D. (2005). Missed opportunities during family conferences about end-of-life care in the intensive care unit. American Journal of Respiratory and Critical Care Medicine, 171, 844-849.

Curtis, J. R., Vincent, J. (2010). Ethics and end-of-life care for adults in the intensive care unit. The Lancet, 376, 1347-1353.

Curtis, J. R., White, D. B. (2008). Practical guidance for evidence-based ICU family conferences. Chest, 134, 835-843.

Gries, C. J. Curtis, J. R., Wall, R. J. Engelberg, R. A. (2008). Family member satisfaction with end-of-life decision making in the ICU. Chest, 133, 704-712.

Hodde, N.M., Engelberg, R. A., Treece, P.D., Steinberg, K.P., Curtis, J.R. (2004). Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Critical Care Medicine, 32, 1648-1653.

Lautrette, A., Darmon, M., Megarbane, B., Joly, L. M., Chevret, S., Adrie, C., Barnoud, D., Bleichner, G., Bruel, C., Choukroun, G., Curtis, J. R., Fieux, F., Galliot, R., Garrouste-Orgeas, M., Georges, H., Goldran-Toledano, D., Jourdain M, Loubert G, Reignier J, Saidi F, Souweine B, Vincent F, Barnes NK, Pochard F, Schlemmer, B., Azoulay, E. (2007). A communication strategy and brochure for relatives of patients dying in the ICU. The New England Journal of Medicine, 365, 469-478.

McDonagh, J. R., Elliott, T. B., Engelberg, R. A., Treece, P. D., Shannon, S. E., Rubenfeld, G. D., Patrick, D. L., Curtis, J. R. (2004). Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Critical Care Medicine, 32, 1484-1488.

Wall, R. J., Engelberg, R. A., Gries, C. J., Glavan, B., Curtis, J. R. (2007). Spiritual care of families in the intensive care unit. Critical Care Medicine, 35, 1084-1090.

White, D. B., Braddock III, C. H., Bereknyei, S., Curtis, J. R. (2007). Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Archives of Internal Medicine, 167, 461-467.

Additional resources:

The University of Washington End-of-Life Care Research Program
Harborview Medical Center
Seattle, Washington
http://depts.washington.edu/eolcare/

Video link: Integrating Palliative and Critical Care
An educational video about improving palliative care in the ICU https://www.ninr.nih.gov/newsandinformation/podcastmultimedia

Palliative Care: The Relief You Need When You’re Experiencing the Symptoms of Serious Illness, a brochure from NINR that can help answer questions that patients and families have about palliative care. http://www.ninr.nih.gov/palliativecarebrochure

NINR Spotlight on End of Life Web Page
http://www.ninr.nih.gov/researchandfunding/spotlight-on-end-of-life-research

The Science of Compassion: Future Directions in End-of-Life and Palliative Care Summit Web Page
http://www.ninr.nih.gov/ResearchAndFunding/scienceofcompassion

Glossary:

Intensive Care Unit, or ICU: A specialized and technical hospital unit to provide a high level of care to severely ill or injured patients.

Life support: Technical interventions like a mechanical ventilator that can artificially sustain or prolong life.

Mechanical ventilator: A common life support measure, involving a machine that breathes for a patient who is unable to breathe adequately alone.  

Palliative care: A form of care focused on decreasing or relieving distressing symptoms such as pain, fatigue, and shortness of breath.

VALUE: An approach for clinicians to use during family conferences on end-of-life care for patients in the ICU, based on:

• Value what the family members say.
• Acknowledge their emotions.
• Listen.
• Understand the patient as a person.
• Elicit questions.