ICU at the End of Life & Bereavement

It can be highly nerve-racking when a loved one is admitted to the Intensive Care Unit. However, it is not an indication that the patient will die. Many people recover after admission to the ICU and can transition to a regular hospital unit or home.

When a loved one goes into the ICU, typically it is because they require more advanced care, such as additional monitoring or treatments that are not available in a regular hospital room. The ICU team of health professionals will closely assess the patient’s condition and provide additional support to help them recover and stabilize.

According to the Society of Critical Care Medicine, the mortality rate for ICU patients varies widely, from 10% to 29% for adult patients. It’s essential to remember that the prognosis hugely depends on factors such as the reason for admission, any underlying health conditions or comorbidities and age. Each patient’s situation is unique, and these statistics do not necessarily predict individual outcomes. It is always best to speak directly with the healthcare team for the most accurate information regarding your loved one’s condition and prognosis.

Sources

“When a Loved One Is in the Intensive Care Unit”. VeryWell Health. https://www.verywellhealth.com/what-to-expect-when-your-loved-one-is-in-the-icu-4147672 

“Critical Care Statistics”. Society of Critical Care Medicine. https://www.sccm.org/communications/critical-care-statistics

Any stay in the ICU is stressful and anxiety-inducing, and this is especially true when the patient is not going to get better. Whether spiritual or religious before entering the ICU, connecting with spiritual support in this unfamiliar scenario can provide comfort and reassurance both for the patient and their decision-makers or caregivers. If you do not have a resource already identified, ask the staff to contact the hospital chaplain who can offer spiritual support for patients of any religion, or none at all. 

A hospital chaplain can help facilitate religious rituals you may want to incorporate into your end-of-life care, join or lead you and your loved ones in prayer, and advocate for your spiritual or religious needs with your medical team. If you prefer to have someone from a different religion or a specific church, temple, or synagogue visit, the chaplain can connect you with local resources or likely make the arrangements you would like. Also, as valuable as the spiritual support of a chaplain is, don’t be shy about making religious needs known to your doctor or other members of your medical team. Any healthcare professional should have high sensitivity to the situation and be amenable to supporting your specific spiritual desires during end-of-life care.

Sources

“Study shows enhanced spiritual care improves well-being of ICU surrogate decision-makers”. Newswise. https://www.newswise.com/articles/study-shows-enhanced-spiritual-care-improves-well-being-of-icu-surrogate-decision-makers 

“What is a hospital chaplain?” Advent Health University. https://www.ahu.edu/blog/what-is-a-hospital-chaplain 

Navigating the end-of-life process in any scenario can feel overwhelming and emotionally taxing — this can feel even more true when you or your loved one is in the unfamiliar surroundings of the ICU. There are several resources and organizations that offer guidance, support and information, both for the person nearing end of life, and their family, friends and caregivers. 

In-hospital resources:

• Hospital Social Workers — Many hospitals have social workers who specialize in end-of-life care and can provide emotional support, help with decision-making and connect families with resources.
• Hospital Chaplaincy Services — Most hospitals have chaplains or spiritual care providers who offer support and spiritual guidance to patients and families during times of crisis and loss. However, you or your loved one needn’t be religious in order to seek a chaplain’s support.
• Palliative Care Teams — Increasingly, ICUs are offering palliative care; such a care team specializes in providing relief from the symptoms and stress of serious illness. They work alongside the primary medical team to address physical, emotional and spiritual needs of patients and families.
  • CaringInfo (part of the National Hospice and Palliative Care Organization) has a robust collection of online resources related to serious illness and care.

Beyond the hospital: 

• Support Groups — Support groups for families of ICU patients, or individuals navigating end-of-life in the ICU, provide a safe space to share experiences, receive support and learn to move through grief. You can ask a hospital social worker for information about local, in-person groups or connect with online communities, such as at ICUSteps or the online ICU Support Group from the Mayo Clinic.
• Online Resources — In addition to support groups, there are many online resources and even a hotline that can provide information and support for individuals and families managing end-of-life in the ICU.
  • ICUSteps has a fantastic and thorough End of Life In ICU Guide (also available as a PDF).
  • The Conversation Project has an excellent Guide for Talking With a Health Care Team, in addition to several other end-of-life guides.
  • You can receive a free booklet, Understanding Your ICU Stay: Information for Patients and Families, from the Society of Critical Care Medicine.

You are not alone during this challenging time, and it can be helpful to know that there are many resources and forms of support available — both inside and outside of the hospital — to help you and your loved ones through this particular end-of-life journey.

Sources

“Patient Communicator App”. Society of Critical Care Medicine. https://www.sccm.org/clinical-resources/patient-and-family 

CaringInfo. https://www.caringinfo.org/ 

“Your Guide for Talking with a Health Care Team”. The Conversation Project. https://theconversationproject.org/wp-content/uploads/2020/12/HealthCareTeamGuide.pdf 

“End of Life in Intensive Care”. ICU Steps. https://icusteps.org/information/information-sheets/end-of-life 

“ICU Support Group”. Mayo Clinic. https://connect.mayoclinic.org/group/intensive-care-icu/ 

“The ICUsteps online community at HealthUnlocked”. ICU Steps. https://icusteps.org/support/online-community 

When a patient dies in the Intensive Care Unit, it can have a significant impact on the emotional and mental well-being of their surviving family members. Deaths in the ICU are often sudden and can result in feelings of disbelief, shock, guilt, or other expressions of grief after receiving notification of the death. Research studies have shown that patient deaths in the ICU are frequently associated with higher levels of posttraumatic stress, depression, and anxiety. 

Sometimes the environment of the ICU can be overwhelming for loved ones who are present. Being surrounded by unfamiliar medical equipment and hearing the frequent tones of alerts or other audible notifications can increase stress while viewing the decline of a loved one who has been admitted for care. It can also be upsetting to witness a loved one’s health decline in a setting that is unfamiliar to them, especially if that individual’s preference would be to die in the privacy of their own home. The setting of the ICU often has the potential to contribute to the trauma associated with the loss. 

Although ICU teams aim to be as accommodating as possible, it may be challenging for loved ones to say goodbye in a manner that is authentic to their cultural or religious traditions. ICUs typically have to adhere to specific regulations and restrictions, so issues such as limited hours for visitation or restrictions on who can be in the same room as the patient can disrupt efforts to maintain traditions or specific rituals. When individuals are unable to honor a loved one per cultural or religious traditions, it can make them feel guilty or limit their ability to fully process their grief.

Overall, the emotional toll of a loved one dying in the ICU can have a long-lasting and detrimental effect on mental health. It is not uncommon for individuals to experience intrusive thoughts, nightmares, or difficulty sleeping after the loss of a loved one in the ICU. Individuals who are experiencing disruption to their daily life following such a loss are encouraged to contact a healthcare provider or mental health professional for further evaluation and additional support.

Sources 

“Factors influencing post-ICU psychological distress in family members of critically ill patients: a linear mixed-effects model”. BMC. https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-021-00206-1 

“ICU bereaved surrogates’ comorbid psychological-distress states and their associations with prolonged grief disorder”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC8996508/ 

The procedure for handling unclaimed bodies at the hospital often varies depending on the hospital policy and the jurisdiction, but most unclaimed bodies are eventually cremated. While burial is also an option, direct cremation is cost-effective and conserves space. The United States does not have a standardized process or system for managing unclaimed bodies, but the general expectation is that the hospital will make a reasonable effort to identify the body of the person who died and contact their next of kin. The length of time dedicated to this search can vary based on state guidelines and may range from a week to a month. 

If the body is not identified and matched to the next of kin or a claimant, what happens to the body next can vary. Some states, such as Florida and Oregon, allow for unclaimed bodies to be sent to medical schools where they will be used to educate students or further progress in important medical research. When the schools are finished using the bodies for these purposes, they are typically cremated. In the event that the body has been cremated and remains unclaimed, the cremation ashes will be disposed of. 

In Washington D.C., and states such as Virginia, unclaimed bodies may be transferred to a funeral home that will handle the upcoming direct cremations. Some funeral homes may choose to conduct their own investigation to try to identify the bodies prior to cremation. Once cremated, the remains are typically provided to the state, which may keep them for up to several years. However, if the cremains are not identified, they are typically scattered in a common grave with other cremains.

Throughout this process, every effort is made to ensure that unclaimed bodies are treated with respect. Hospitals, state departments, law enforcement, and funeral homes all have specific regulations and protocols that emphasize the importance of maintaining the dignity of those that they serve. Ample actions are taken to try to identify unclaimed bodies in a timely manner, but for those who remain unclaimed, professionals strive to handle them in a manner that demonstrates genuine compassion and respect in the absence of a family member or loved one. 

Sources

“This is What Happens to Unclaimed Bodies in America”. TalkDeath. https://talkdeath.com/this-is-what-happens-to-unclaimed-bodies-in-america/ 

“The 2024 Florida Statutes (including 2025 Special Session C)”. Florida Legislature. http://www.leg.state.fl.us/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0400-0499/0406/Sections/0406.50.html 

“What Happens to an Unclaimed Body?”. Direct Cremate. https://www.directcremate.com/what-happens-to-an-unclaimed-body/ 

The amount of time you may spend with a loved one who has died in the ICU is typically left to the discretion of the hospital and can vary based on their internal policies. Many hospitals have policies that allow families to spend some time with their loved ones after death as a way of processing their loss. However, the amount of time is usually somewhat short since the hospital needs to transfer the loved one’s body to the morgue or mortuary. This usually occurs within one to two hours after death.

It’s crucial to understand that hospitals often require additional bed space due to the high volume of patients. This is why they prioritize transferring your loved one to the morgue or mortuary. Some hospitals may be more flexible, allowing families extended time with their loved ones based on cultural or religious grounds. Generally, both ICU and hospital staff are highly respectful and considerate of requests for privacy after the death of a loved one, and they are willing to accommodate reasonable requests to the greatest extent possible. 

Sources

“End of Life in Intensive Care”. ICUSteps. https://icusteps.org/information/information-sheets/end-of-life 

When patients are identified as potential organ donors, the intensive care unit (ICU) staff follows designated protocols and works closely with the families of these patients while demonstrating an overarching sense of compassion and respect. Many of the organs that are appropriate for donation come from patients who were in the ICU. Since the circumstances surrounding organ donation in the ICU can be a sensitive topic for families, the ICU team knows that they need to provide emotional support and respect when navigating related discussions. 

When the ICU team initially identifies a patient who fits the criteria for organ donation, they will contact an organ procurement organization or OPO. The OPO is responsible for evaluating the patient’s medical history and determining if they are appropriate for organ donation. Since the OPO has to evaluate the appropriateness of each organ donor, the ICU team needs to contact the OPO before any discussions are shared with the patient’s family. This prevents the possibility of asking a family about organ donation and moving forward with the process only to later determine that the patient isn’t a suitable donor. 

If the OPO determines that the patient is a suitable donor, the ICU team will begin to introduce the topic of organ donation to the family and discuss it further. Providing accurate information and education about organ donation can be crucial in order to get written permission for donation from the family. The ICU team will discuss the potential benefits of organ donation, its potential to save lives, and also answer common questions about the implications of donation, such as concerns surrounding conducting an open casket funeral after the donation process is complete. During this period, the team’s focus is to ensure that the family understands the donation process and the significance of making a decision. 

Throughout this process, the ICU team will provide emotional support to the family and respect their wishes. If the family agrees to the organ donation, the team will collaborate with the OPO to ensure that procedures, logistics, and other aspects of the process are taken care of. If the family has any cultural or religious beliefs in relation to organ donation, the ICU team will also ensure that these beliefs and values are respected and maintained to the fullest extent. 

Sources

“Deceased donor organ donation”. Nursing 2020 Critical Care. https://journals.lww.com/nursingcriticalcare/fulltext/2018/07000/deceased_donor_organ_donation__the_critical_care.5.aspx 

“Views on organ donation: donor families”. Health Talk. https://healthtalk.org/experiences/organ-donation/views-organ-donation-donor-families/ 

Intensive care unit (ICU) staff provide families with information, guidance, and emotional support when deciding post-mortem examinations or autopsies. Doctors may suggest an autopsy or post-mortem examination in an ICU to gain further medical insight or determine the cause of death. Sometimes, the information gained through autopsy findings can provide family members with peace of mind regarding the death of their loved one, especially if they have doubts or concerns about the medical care they received or the severity of the disease or injury that resulted in death. 

However, autopsies are frequently a sensitive topic for family and loved ones. Members of the ICU care team provide education about the purpose and potential benefits of autopsies or post-mortem examinations. This information is often also shared with the patient before death since an autopsy can contribute valuable information to medical research and education by allowing others to gain insight into a disease or condition. By explaining the purpose of autopsies to families and patients, the ICU staff empowers them to make informed decisions.

The ICU staff also provides emotional support as families navigate the decision-making process associated with autopsies or post-mortem examinations. They aim to create a non-judgmental, compassionate environment for those considering whether to proceed with an autopsy. They also recognize that these decisions often directly follow the loss of a loved one, so they may connect family members with support groups and resources or facilitate open discussions regarding concerns and expectations about the autopsy process. 

Similarly, ICU staff provide families with information if they decide they want to move forward with an autopsy. ICU care teams are experienced in coordinating with medical examiners, pathology departments, funeral homes, and many other professionals who can help facilitate the process or make logistics easier to handle. Since documentation can sometimes become complicated and overwhelming, they also spend considerable time guiding how to navigate the legal aspects associated with an autopsy. Through consistent education, coordination and emotional support, ICU staff support patients and their families through challenging decisions while upholding the importance of respecting their preferences.

Sources

“Autopsy”. MedicineNet. https://www.medicinenet.com/autopsy/article.htm 

“Autopsy and critical care”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC5606467/ 

Policies regarding advance care planning and end-of-life directives often vary among intensive care units in different healthcare institutions. Many patients with life-limiting illnesses or injuries do not have any documented advance directives while receiving care in the ICU, which can prompt conversations surrounding end-of-life preferences. However, in circumstances where an advance directive is not already in place, and the patient is already incapacitated due to injuries or life-limiting illnesses, the ICU team typically must contact the patient’s next-of-kin to make decisions regarding the patient’s care.

In an ideal situation in which the patient is not already incapacitated, the process of advance care planning would involve a discussion between the patient, their family, and the attending healthcare provider. This conversation would encompass preferences regarding interventions, life-sustaining treatments, and resuscitation, as well as any necessary documents that need to be included in the patient’s chart. These efforts ensure that the patient’s autonomy and capacity for decision-making are respected and upheld when decisions must be made regarding their care. Even so, studies have shown that physicians and nurses in the ICU sometimes struggle to facilitate end-of-life discussions with patients, which can suggest that this is not entirely appropriate within the scope of services provided in the ICU.

Although ICUs have policies in place to address advance care planning and end-of-life directives, it is essential to recognize that these components should be addressed proactively before an ICU admission is ever required. Since the purpose of intensive care is typically to provide life-saving interventions, it is not the most appropriate setting for discussing how aggressive patient care should be. Additionally, it can be challenging to effectively develop these plans due to the severity of the patient’s condition. Therefore, it is best to ensure that all preferences regarding end-of-life care are established well in advance of these decisions needing to be made in an emergency. 

Sources

“Intervention and efficacy of advance care planning for patients in intensive care units and their families: a scoping review protocol”. Nursing Open. https://pmc.ncbi.nlm.nih.gov/articles/PMC7877163/

“Advance directives in the trauma intensive care unit: Do they really matter?” International Journal of Critical Illness & Injury Science. https://pmc.ncbi.nlm.nih.gov/articles/PMC3249846/

Intensive care unit (ICU) teams typically implement a multidisciplinary approach to address all of the needs of the patient and their family, including those that are spiritual and emotional. Spiritual care providers or chaplains have an important role in offering spiritual support to patients and families. They may provide prayers, conduct spiritual assessments, facilitate discussions, or perform rites and rituals if requested by the patient or their family. 

A common misconception is that spiritual care providers are representative of specific faith traditions. However, most spiritual care providers are interfaith or interspiritual, meaning that they provide guidance and support regardless of affiliation or religious belief. Some clinicians in the ICU also have received basic training to assess spiritual and religious distress, enabling them to refer patients to chaplains and spiritual care providers in a timely manner.

If the patient or family is in emotional distress, a counselor or social worker on the team may help them navigate the often overwhelming emotions associated with terminal illness or end-of-life decisions. These members of the team create space for patients and families to share their concerns and express their feelings in a judgment-free environment. They can also provide resources and general advice on healthy coping strategies. 

Some ICUs offer support groups or group therapy to help patients and their families connect with other individuals who are experiencing similar challenges. ICU team professionals dedicate themselves to ensuring support and guidance are available at every level and in a variety of settings. Ultimately, the ICU has many components that emphasize spiritual and emotional needs are an integral part of holistic care. 

Sources

“Challenges and Enablers of Spiritual Care for Family Members of Patients in the Intensive Care Unit”. Sage Journals. https://journals.sagepub.com/doi/abs/10.1177/1542305019890120 

“What to Expect in the Trauma ICU”. Scrubbing In. https://www.bswhealth.com/blog/expect-trauma-icu 

The options for end-of-life care in the ICU are numerous and should be tailored to the unique needs of each patient. In general, end-of-life care in this setting is aimed at providing comfort, reducing suffering, and ensuring dignity and respect during the dying process.

One common form of end-of-life care in the ICU is palliative care, a multidisciplinary approach aimed at alleviating symptoms and improving the quality of life for patients facing severe illness. Palliative care generally entails pain management for the ICU patient along with emotional support for the patient and their family members. It can occur along with intensive, curative medical treatments, though, and isn’t restricted only to end-of-life. 

Hospice care is another option, typically reserved for patients who have a life expectancy of six months or less. Provided by a team of healthcare professionals, hospice care prioritizes comfort and quality of life over curative treatment, along with emotional and spiritual support for the patient and family. Few hospitals offer inpatient hospice in the ICU. However, a dying patient may be transferred to a dedicated inpatient hospice unit if one is available. In some cases, the patient may even be discharged from the ICU directly to home hospice, although the logistics of this can be challenging. If the patient is extremely unstable,  it may not be possible to transfer them out of the ICU.

Comfort care, another alternative, focuses solely on quality of life and symptom relief, potentially including the withdrawal of life-sustaining treatments. It is similar to palliative care yet does not incorporate any curative treatments. The terms “palliative,” “hospice,” and “comfort” care are often used interchangeably, and if a doctor or member of your loved one’s medical team uses one of these terms, it’s important to clarify precisely what they mean.

Finally, shared decision-making involves patients, families, and healthcare providers working together to make decisions about end-of-life care that align with the patient’s values and preferences. Note that these care options can and often do overlap. 

Each of these options presents its own set of benefits and considerations, and the best choice will depend on the patient’s condition, prognosis, and personal wishes.

Dying in the ICU

It’s not unusual for a patient to die in the ICU, and there are a few common circumstances under which this may occur.

One common scenario is after the decision is made to limit life-sustaining treatment, such as when the patient or their family elects to decline or withdraw aggressive interventions. This could be due to the understanding that the interventions are no longer beneficial or in line with the patient’s wishes.

Another such circumstance is death following an unsuccessful resuscitation attempt, or a “Code Blue.” This usually happens when a patient’s heart stops (cardiac arrest) or they stop breathing, and despite the best efforts of the medical team, they cannot be revived.

Death may also occur as a natural progression of a severe illness that has become untreatable or unmanageable. This is often the case with advanced stages of diseases like cancer, heart disease, liver disease, or neurodegenerative disorders. In some of these cases, a patient may die even when on life support. 

Lastly, some deaths in the ICU occur unexpectedly due to sudden health complications, such as a severe infection, a sudden heart attack, or a massive stroke. These situations can occur even in patients who were initially admitted to the ICU for less critical conditions.

Sources

“Primary palliative care recommendations for critical care clinicians”. Journal of Intensive Care. https://jintensivecare.biomedcentral.com/articles/10.1186/s40560-022-00612-9 

“What Are Palliative Care and Hospice Care?”. National Institute on Aging. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care 

“What is Comfort Care?” Caring Info. https://www.caringinfo.org/types-of-care/comfort-care/#different-from-palliative 

“Types of Care”. Caring Info. https://www.caringinfo.org/types-of-care/ 

“Patient participation in shared decision-making in palliative care – an integrative review”. National Library of Medicine. https://pubmed.ncbi.nlm.nih.gov/34028923/