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Care of the Family 

Care of the Family
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Care of the Family
Author(s):

Michele Fiorentino

DOI:
10.1093/med/9780190858360.003.0025
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date: 24 February 2020

Introduction

The top priority of physicians is the care of their patients. As surgeons, we focus on surgical procedures and the complex care we provide following surgery. When caring for the critically ill, most of our interactions and conversations will not be with the patients but with their families. In order to provide the best possible care to the patient, we must also pay special attention to how we care for the family.

Grief

Grief is the normal response one has after experiencing a loss. Bereavement is the grief that specifically follows the death of a loved one. As a physician caring for seriously ill individuals, it is necessary to be able to recognize and help facilitate healthy grieving in our patients and their families. During times of acute grief, it is normal for patients to experience yearning, longing, and decreased interest in activities.1 During a prolonged illness, patients and families may experience grief at any time. This grief may be associated with different diagnoses, not just impending death. Grief may be due to a new diagnosis, loss of functional status, loss of a limb, impending death, or what may seem like a trivial event in patients with a prolonged illness. It can often come in waves that usually decrease over time. Physicians should be prepared to help patients and their families deal with their grief as it occurs. Physicians can help support grieving patients and their families by encouraging loved ones to spend time with the patient and acknowledge their relationships. Physicians can also show appreciation to loved ones and caregivers for the valuable support they provide.

Patients and their families may also experience anticipatory grief, which precedes an impending death.2 In patients, this involves reviewing their life and preparing for death. In families, anticipatory grief involves coming to terms with and preparing for life without their loved one. Anticipatory grief is a healthy reaction, and physicians should encourage families to begin this part of the grieving process if they have not done so.

Complicated Grief

A period of grief and bereavement is a normal response to the death of a loved one, but it can become complicated in about 7% of the bereaved.3 Although there has been an ongoing debate over diagnosis and different forms of complicated grief, they all represent a dysfunction in the ability of the family to appropriately deal with the loss of their loved one. Complicated grief can have a profound impact on the individual’s mental and physical health, including an increased risk of suicidal behavior.4 An increased risk of complicated grief is more prevalent with females, any individuals with insecure attachment styles, weak parental bonding in childhood, childhood abuse and neglect, low perceived social support, and supportive marital relationships.

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) recognized persistent complex bereavement disorder in family members with a persistent yearning or longing for the deceased that lasts greater than 12 months.5 These family members have clinically significant distress or impairment in psychosocial functioning following the event. Family members at risk or who are displaying persistent complex bereavement disorder should receive further help. Do not hesitate to refer patients to other healthcare professionals as this issue is not in a surgeon’s scope of practice. Mental health professionals are better equipped to properly assist these individuals.

In cases of traumatic death, family members may experience traumatic grief and post-traumatic stress disorder (PTSD). The sudden unanticipated nature of the death can complicate mourning. With trauma, grief is affected by many aspects of the situation including

  • Shock of the death, which affects the ability to cope

  • A loss that may not make sense

  • No chance to say goodbye

Traumatic deaths often leave mourners with more intense emotions. In the cases of PTSD, family members experience intrusive thoughts and avoidance, but they surround the actual traumatic event, not specifically the deceased. Surgeons should recognize these conditions and not hesitate to get other specialties involved.

Interventions that have been shown to effectively treat complicated grief include cognitive behavioral and group therapy.6 In a recent randomized clinical trial, the addition of an antidepressant along with targeted complicated grief treatment optimized co-occurring depressive symptoms.7 Individuals suffering from complicated grief should be referred to a mental health professional for further evaluation and treatment.

Management of Acute Grief After Traumatic Death

The sudden and unexpected nature of traumatic death can often lead to complicated mourning. In traumatic or sudden death, the family has no time for anticipatory grief and is not prepared for life without their loved one. There are strategies that can be applied to decrease the risk of complicated grief and PTSD. Families should be offered the opportunity to see the patient before death if possible, even if just for the resuscitation. Not being able to “say goodbye” is associated with PTSD.8 The delivery of the news itself is extremely important and covered in detail in the chapter on breaking serious news. When breaking news of a traumatic death, it should be done in a private and quiet area. The physician breaking the news should be prepared ahead of time and know all relevant information about the patient, including the prehospital treatment. Before breaking the news, a warning shot should be given, such as, “I have some serious news,” to prepare the families for what they are about to hear. Physicians should listen and provide support for the family following the disclosure. After the encounter, the family should be given the opportunity to see the patient, even after a traumatic death.9

Meeting the Needs of the Family

One of the most important aspects of meeting the needs of the family is communication.10 Families value receiving clear and consistent information from the healthcare team. A family meeting should be scheduled with any major changes in the patient’s condition. Early and repeated conferences can help reduce stress and improve consistency in communication. Physicians should be complete and honest during these conferences when discussing prognosis, goals of care, and treatment options. Families often state one of the main sources of anxiety or depression is receiving incomplete or contradictory information from the healthcare team.11 To decrease contradictory information, meetings should be multidisciplinary if schedules allow. This allows for all consultants to be on the same page and to provide families with the most complete information available. Besides having all consultants available for family meetings, having counselors or pastoral support has been reported by families to be a source of psychosocial support.12 During these conversations, physicians must also spend time listening. Families report increased satisfaction when doctors spend less time talking and more time listening.13

Surrogate Decision Makers

The majority of patients in the intensive care unit (ICU) do not have the capacity to make their own decisions.14 Even those that are awake may not have the capacity and should be evaluated using validated tests, such as the Confusion Assessment Method for ICU (CAM-ICU).15 Using these validated methods, the surgeons should be able to assess capacity without the need to involve other specialties. When patients are unable to make decisions for themselves, a surrogate decision maker must act on their behalf to make medical decisions. All hospitalized patients should have a surrogate decision maker identified. If no surrogate is named, every effort should be made to identify one while the patient is still healthy enough to choose one for him- or herself. Up to 27% of patients dying in the ICU lack capacity, a surrogate, or an Advanced Directive (AD).16 If a surrogate decision maker is not identified and the patient is incapacitated, state laws will govern who the surrogate decision maker should be and the hierarchy of decision makers.

Once a surrogate is identified, the capacity of the surrogate should be evaluated. Many family members of patients in the ICU are under extreme stress and may be experiencing PTSD or inability to make decisions due to their grief.17 Any surrogate decision maker that does not have capacity should not be making decisions on behalf of the patient. The surrogate decision maker needs to be fully informed of the patient’s condition. In order for these decision makers to make the most appropriate decisions on behalf of the patient, they need to understand the current condition, diagnosis, prognosis, and treatment options. It is essential that surrogates have all the information available to them so they may make the most informed decision consistent with their loved ones wishes. Surrogates often cite that they value an opportunity to meet with the attending physician for a mutual exchange of information. Printed information for families in the ICU have also been reported to help inform and better prepare surrogate decision makers.18

The surrogate decision maker should make his or her decision based on what aligns with the patient’s own wishes and values. It is much easier to know what the patient would have wanted when the patient has a clear advance directive or has had a previous conversation with the surrogate. Even in cases where a surrogate is directly chosen by the patient, they struggle to make decisions that align with the patient’s wishes. In a systematic review, decisions made by next of kin or a surrogate decision maker conflicted with the wishes of the patient in one-third of decisions.19 Surrogates have often received no previous guidance from the patient on how to precede and must use their best judgment of what they believe the patient would have wanted. The surrogate making the decisions should be reminded that it should be what the patient would have wanted, not what they want.

Surrogate decision makers who need to make end-of-life decisions may experience anxiety or guilt of having made the “wrong decision.” The stress and anxiety of the decision maker can be decreased by having goals-of-care meetings with the medical team, specifically the “doctor in charge.” When the family feels well informed and respected, they are normally more comfortable in making these difficult decisions.

Preparing the Family for What to Expect With Impending Death

When death is anticipated and patients are progressing to the final stages of life, the physician should educate the family on what to expect. Ask the family, “Would you like to be prepared for what to expect?” If they answer yes, describe the changes that they may experience. Symptoms that should be discussed with family are in Table 25.1. Prepare the family for the physical changes that will occur as death is approaching, such as blood pressure decreasing, pulse increasing or decreasing, increased perspiration, breathing changes, and congestion in the lungs. Also explain to the family what to expect once death has occurred: no breathing or heartbeat, loss of control of bladder/bowels, no response to verbal commands or gentle shaking, eyelids slightly open and fixed, jaw relaxed and mouth slightly open, and myoclonus. Besides just preparing the family, make sure to let the family know how symptoms will be relieved. Explain that the patient will be given pain medicine and anxiolytics to alleviate suffering. It is important to make sure the family knows the patient is comfortable.

Table 25.1 Common Features of Dyinga

Features

Examples

Social withdrawal

  • Becomes less concerned about surroundings

  • Decreased interest in outside events such as news or television

  • Decreased interest in communicating with people

Food

  • Decreased appetite for food and drink

Sleep

  • Increased time sleeping

Disorientation

  • Confusion about time, place, and people around them

  • May see people who are not there, including those who have died

Restlessness

  • Pulling at bed linens and things around them

Decreased senses

  • Decreased vision and hearing

a Table adapted from Von Gunten CF.27

In the situations where the family and surrogate decisions makers have decided to withdraw life support, it is important to prepare the family specifically for that process. Many families mistakenly believe that once these treatments are withdrawn that death will be immediate. It is important to explain to them that it is very difficult to predict exactly when death will actually occur. They should understand that it may occur over minutes, hours, or days. Again, during this time, it is important that you explain that the patient will be kept comfortable and how symptoms will be controlled.

Family Presence During Resuscitation

Cardiopulmonary resuscitation (CPR) is a very traumatic event for patients and families. It may be the last time that the family gets to see or spend time with the patient before death occurs. Although CPR is a very traumatic event, family presence during the event can help with the emotional needs of the family and facilitate improved decision-making. When first proposed, family presence was believed to be disruptive to physicians and damaging to families. Over time, it has become more widely accepted, and many institutions have developed programs for family presence during resuscitation (FPDR).

Proponents of FPDR note benefits for patients, families, and the medical team. If the patient is awake and aware of their surroundings, having family present can provide them comfort. For families, FPDR can help with closure and grieving.20 As families witness the intense environment of a resuscitation, they will see all the interventions that have been done for the patient. It can also be helpful for families who do not have full understanding of the situation; being present will allow them to see the serious nature of their loved one’s situation. Although it is an unpleasant scene, surveyed families said they would choose to witness the resuscitation again if offered the opportunity.20 For surrogate decision makers, witnessing attempts may ease them in their decision to suspend further attempts. For the medical team, having family present allows the family to be available for “in-the-moment” medical decisions if needed. Family presence also helps to remind the team of the person they are treating and can help to encourage more professional behavior.

Although generally well accepted, there are still concerns with FPDR. The critics’ main concern is that witnessing resuscitation would cause increased trauma to the family, causing increased grief and anxiety. This has not been proven and families that have participated in FPDR have showed fewer symptoms of complicated grief.21 Distraction of the medical team is another major concern of opponents of FPDR. During a resuscitation, the primary concern should be providing the best possible care to the patient, and physicians should not be distracted by the family presence. There is no supporting data that FPDR affects the quality of the resuscitation. Resident trainees who are less confident in their overall skills are more likely to be affected. In simulated settings, they were affected by the family’s presence, but this problem has not been replicated during actual resuscitations.22 After implementation at sites, this approach has been well accepted by attending physicians and critical care nurses.23 Although FPDR has not proven to be detrimental in practice, these concerns should be considered.

To gain the benefits of FPDR, it must be performed in a standard fashion and with great care. Only one or two family members should be brought in at a time; having more people present can be disruptive to the medical team. When deciding which family members should be present during the resuscitation, the surrogate decision maker should be encouraged to be present.24 This is important because if decisions need to be made in that moment, the surrogate will already be present. Witnessing the resuscitation can also help surrogates with decisions they will need to make later in the patient’s care.

Before going into the resuscitation, ground rules should be set with the family, and they should be warned about what they are about to see. Warn family about potentially invasive procedures, presence of blood, and the intense environment they are about to witness. FPDR should not be offered to family members that are histrionic or aggressive.

During the resuscitation, the family members should never be left alone. A designated member of the healthcare team should stay at the side of the family members at all times; the team member should explain what is happening, answer any questions, and check in on the emotional state of the family. The team member should also be ready to remove the family if they become overwhelmed or a distraction to the healthcare team. The team member that stays with the family can be from any specialty: doctor, nurse, counselor, or chaplain. A counselor or chaplain can be a good choice as they will not feel the need to become involved and help with the resuscitation.

Following the resuscitative effort, support should be offered to the family. A debriefing session should be held with the family to explain the events that took place. If the patient dies, the family should be allowed to remain with the patient. Families should be referred to bereavement programs or offered support as needed.

Care of the Family Immediately Following Death

Once a death has occurred and the patient has been pronounced, it is important to let families say goodbye. Let them know that they may spend some time with their loved one. Offer them privacy and bring chairs to the bedside. This act of saying goodbye will offer the family some sense of closure. If the patient is pronounced by a resident or another member of the healthcare team, the attending physician should still come to speak with the family. The family will expect to see their doctor. Offer families the opportunity to speak with a counselor or chaplain or provide information on bereavement services.

Following death, writing a condolence letter to the bereaved is a small act of kindness that can provide comfort. Mourners will be very appreciative that you took the time to sit down and write a letter. When writing a letter begin by naming the deceased and acknowledging the family member’s loss. Express sympathy and point out specific qualities of the deceased. Bereavement can cause people to experience self-doubt, so it is important to remind the bereaved of their own personal strengths. The bereaved are often overwhelmed, so offer specific help. The letter should end with a phrase of sympathy.

Death of a Child

The death of a child is a devastating event for families that will affect them for years after the death. During and following this tragic event, physicians must provide care to the bereaved family. Immediately following the death, families should be given time and space to say goodbye to the child. The family should be allowed to hold or lay with the child following the death, even after a trauma.25 Families may later regret it if they are not given this chance to say goodbye. Parents will want to know the full details of their child’s death. At the time of death is it important to give the family the details that are known. As more information becomes available, such as from autopsy reports, it is important to follow up with the family. In the days and weeks following the death, the family should be provided with follow-up appointments. They should follow up with their pediatrician or a bereavement team, which can help to provide emotional support. Hospital staff should initiate bereavement interventions, as families often do not know to request them.26

Conclusion

In caring for surgical and critically ill patients, caring for the family is a necessary and essential part of taking care of the patient. In order to provide the best possible care, all physicians must effectively communicate with the family to provide them information and comfort. During these times, it is important that the physician does everything in his or her power to keep the family up to date and to help them grieve appropriately. It is also important that physicians recognize inappropriate grief reactions and refer patients and families to a specialist. In the critically ill, caring for the family is just another aspect of caring for the patient.

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