Coping With the Death of a Child in the ED

Health professionals often do not receive formal training in coping with pediatric deaths likely to be encountered in practice. Being unprepared for these intense experiences can negatively affect the health professional and the quality of care provided to survivors. 

After a young patient is pronounced dead in the emergency department (ED), surviving family members are in crisis. ^[5] Survivors can benefit from the engagement of the emergency physician who treated the family member. In addition to making medical decisions during resuscitation, the role of the emergency physician is seen as one of assisting in alleviation of suffering.

A patient's death in the ED, especially the death of a child, is often unexpected. The nature of ED practice is such that the emergency physician often does not have an ongoing professional relationship with the patient's family. Indeed, a patient's death often finds the emergency physician and the patient's family meeting each other for the very first time. This can be a difficult and emotional situation for both physician and family.

In an effort to assist certain care aspects of the child who is pronounced dead in the ED, this article's suggestions are meant only as guidelines to minimize errors. Each patient death is arguably unique. A standard "cookbook" approach by the physician is arguably inappropriate.

Information contained in this article is intended to provide general advice on the subject. As with other aspects of clinical medicine, general advice must be modified according to the individual patient and clinical circumstances. Nothing herein should be applied uncritically to the care of any individual patient or family.

This article is not intended to be encyclopedic. Healthcare professionals can anticipate being students of this topic for their entire professional lives. The author feels this strongly. Accordingly, readers are encouraged to share thoughts and experiences on this subject with the author via email. The opportunity for feedback from readers was a motivation for writing this article. A subject as emotional and potentially controversial as patient death in the ED has many facets. Like pieces of a jigsaw puzzle, each facet contributes to produce a complete clinical picture. Sharing thoughts and experiences is essential to the process of solving the puzzle.

Because a child's death may be viewed as especially tragic, ED personnel may have strong feelings of nonspecific sadness and loss. In the aftermath of a pediatric death, the emergency physician may have feelings that make it difficult to maintain composure. Natural psychological defenses are unconsciously summoned to assist the physician in maintaining composure. A problem may develop if the physician's defenses produce actions that are harmful to survivors of the dead child.

Survivors of a child who has recently died are likely to require emotional support. Every physician cannot be completely supportive of every family member at all times. However, it is reasonable to ask physicians to be aware of their defenses and to avoid actions that interfere with survivors' grief.

"First, do no harm" is a widely known and generally accepted clinical precept. In the care of a patient, the physician should avoid actions that cause harm or produce more harm than good.

Physicians with children may be especially vulnerable to an emotional response to a child's death. If physicians' children are nearly the same age as the deceased patient, physicians may realize suddenly, perhaps for the very first time, the possibility of losing their own children. Physicians with children may also identify with the parents' loss.

Because a child's death may be viewed as especially tragic, ED personnel may have strong feelings of nonspecific sadness and loss. In the aftermath of a pediatric death, the emergency physician may have feelings that make it difficult to maintain composure. Natural psychological defenses are unconsciously summoned to assist the physician in maintaining composure. A problem may develop if the physician's defenses produce actions that are harmful to survivors of the dead child.

Survivors of a child who has recently died are likely to require emotional support. Every physician cannot be completely supportive of every family member at all times. However, it is reasonable to ask physicians to be aware of their defenses and to avoid actions that interfere with survivors' grief.

"First, do no harm" is a widely known and generally accepted clinical precept. In the care of a patient, the physician should avoid actions that cause harm or produce more harm than good.

Physicians with children may be especially vulnerable to an emotional response to a child's death. If physicians' children are nearly the same age as the deceased patient, physicians may realize suddenly, perhaps for the very first time, the possibility of losing their own children. Physicians with children may also identify with the parents' loss.especially tragic.

Crisis

Crisis involves powerful and often uncontrollable emotions. Individuals in crisis may need assistance in moderating their emotions. Recruiting other family members, clergy, friends, and others to support an individual in crisis is often helpful. The physician should repeatedly recommend specific actions for the safety of the person in crisis (eg, "don't drive home, call a friend or cab").

Because individuals in crisis often behave illogically or have impaired decision-making abilities, responsibilities to dependents may be forgotten. Therefore, it is wise to inquire about other children or elderly family members who may require assistance. These individuals may forget about potentially unsafe conditions at home; inquire about safety items (eg, whether electricity to a stove or water to a bath was been left on). The physician should also ask whether the home was locked prior to coming to the hospital.

Grief

Grief is a natural reaction to the death of a child. The grief process begins with understanding that the child's death is real.

The physician should allow (not force) family members to see or hold their dead child. However, the family should be prepared for what will be seen and possibly misunderstood without prior explanation (eg, endotracheal tubes, chest tubes, other resuscitation equipment) when they enter the resuscitation area. Occasionally, offering the family the opportunity to take with them a memento (eg, a lock of hair) helps.

Suffering is a natural part of grief. The physician should accept a wide range of emotions of families suffering from the loss.

Families often feel guilty. If possible, reassure families that they did not contribute (either by acts of commission or omission) to the child's death. Reassuring families that every care procedure that could have been implemented in the ED was implemented is also important.

7 Reasons

1.) I believe all persons have the right to the powerful and protective benefits of faith, whatever that may be for them, especially during times of struggle and illness.


2.) I believe all persons deserve well-trained caregivers to be with them just as they are​ as they access and explore their own beliefs to find meaning, peace, and comfort.


3.) I believe that if we fail to provide competent spiritual care then we are subtly engaging in spiritual neglect, because we fail to treat the whole person.


4.) I believe when persons invite a spiritual care counselor (“chaplain”) or other healthcare worker into their home and life to care for them at one of the most vulnerable times imaginable, they deserve that care to come without judgment or coercion, whether unintentional or direct, which can equate to spiritual abuse.


5.) I believe that well-meaning and well-intentioned healthcare workers desperately want to serve patients and families well and simply need the support and training necessary to be able to do so without unwittingly committing either extreme of spiritual malpractice.


6.) I believe when we are personally developed well enough to BE with the suffering of others and trust them to find their way, we will be able to accept them, their path, and their pain without needing them to be different so we can feel better.


7.) I believe the greatest honor, dignity, and act of service we can give others is our ability to sit well-enough with our own pain so that we can be comfortable sitting with them in theirs until they find their own way, their own meaning, and their own answers.

What is “Palliative Care”?

The World Health Organization defines palliative care (PC) as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention of and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.” To meet these multidimensional needs, PC is usually provided by a team including physicians, nurses, social workers, and chaplains. Patients can receive PC at any time along the trajectory of a serious or life-threatening illness. (This is distinguished from hospice care, a subset of PC that is reserved for end of life treatment.) PC can also be provided in conjunction with treatments aimed at life prolongation. For example, a patient with metastatic breast cancer may be treated by an oncologist who focuses on cancer treatment while a PC team focuses on management of symptoms (pain, nausea, shortness of breath, depression, anorexia, fatigue, spiritual distress, etc) and assists with advance care planning.

In the United States, PC is generally provided as an inpatient or outpatient consultation. Providers may request a PC consultation to assist with clarification of the patient’s goals of medical care, symptom management, communication between the medical team(s) and the patient and family, prognostication in advanced illness, advance care planning, and end of life (EOL) care. For instance, a common consultation is to help a patient with advanced liver disease to understand the severity of the illness and treatment options, and to manage pain, shortness of breath, and nausea.

The ultimate goals of consultation are to treat symptoms of advanced illness and to assist patients and families in understanding their prognosis, in expressing the goals (or most important factors) in their medical care, and in receiving medical care that is aimed at achieving their goals of care. For example, is the patient with liver disease more interested in staying in the hospital to receive intravenous therapies of marginal benefit or in returning home to spend time with family and friends?

Hospice Care
Hospice care, by contrast, is a specific type of palliative care for patients nearing the end of life. In the United States, hospice refers to a healthcare benefit provided through Medicare Part A or private insurance. A patient is eligible to receive hospice care if two physicians certify that he or she has a life expectancy of six months or less if the “disease runs its usual course.” In addition, the patient must choose to trade standard Medicare Part A (inpatient) coverage for the hospice benefit, which covers medical care that is usually provided in the home and is focused on comfort and relief of suffering rather than life prolongation. Patients with any end-stage disease (heart failure, dementia, COPD, HIV, cancer) are appropriate for hospice referral. Hospice care is the form of PC that most physicians are familiar with; however PC is a much broader discipline.

Discussing End of Life Care with Patients
In addition to focusing on the relief of suffering, palliative providers are often involved in discussions about advance care planning and EOL care. For example, we may discuss prognosis, current treatment options, and options for future care with a patient with end-stage COPD. Specifically we would talk about what is most important to the patient in the time they have left to live and how their medical care can help them to achieve these goals. We would review if the patient is interested in intubation/ICU care or care that is entirely focused on their comfort in the event of a future COPD exacerbation.

There is a robust body of literature demonstrating that the majority of patients want to have these discussions with their providers, yet fewer than 50% of patients actually do (Reilly et al, Arch Intern Med 1994:154(20):2299–2308). Providers often cite barriers to having these conversations, such as a lack of training, lack of time, and concern that such discussions may harm patients or “take away their hope.”

Multiple studies have evaluated the effects of these conversations on patients’ treatment choices, quality of life, and mental health in addition to the effects on caregivers’ quality of life, mental health, and perception of the patient’s death. The Coping With Cancer study was a multisite prospective cohort study of 332 patients with metastatic cancer who progressed through first-line chemotherapy, and their caregivers (Wright et al, JAMA 2008:300(14):1665–1673). The 37% of patient/caregiver dyads who reported having a discussion about end of life care with their providers were compared to the dyads who reported not having these conversations. The patients who had the discussions were more likely to prefer medical care focused on relief of pain and suffering over life-extending treatments. These patients also were more likely to complete a DNR order and less likely to be admitted to the ICU, receive mechanical ventilation, or undergo a resuscitation attempt. Interestingly, patients who received less aggressive care experienced a better quality of life without a decrement in survival time. EOL discussions were not associated with patients feeling depressed, sad, terrified, or worried or meeting DSM criteria for a psychiatric disorder.

Their caregivers benefitted, too. Caregivers of patients who received aggressive care in the last week of life were more likely to develop major depressive disorder, experience regret, feel unprepared for the patient’s death, and report poorer quality of life and health after the patient’s death. This study supports the concept that EOL discussions and less aggressive EOL medical care are associated with better quality of life among patients and their caregivers.

Patients report that the manner in which EOL discussions are held is as important as the content of the discussions. According to current research, cancer patients in Western countries want realistic, truthful information that is delivered with a focus on what can be done (symptom management, emotional support, practical support, and maintenance of dignity). They value discussions in which the provider explores realistic goals as a means of fostering hope. Such goals might include control of pain and shortness of breath so patients can spend more time talking with their families. Patients feel that a discussion of what the future may hold should be well-timed. They want the information to be given when loved ones can be present and when the provider can spend an adequate amount of time with them. Lastly, patients value respect for their emotional state and an acknowledgement of the emotional, spiritual, and existential impact of having a life-threatening illness.

TCPR’S VERDICT: Given the heavy emotional burden associated with advanced illness, there has always been a significant role for psychiatry in PC. An important demonstration of this role is the inclusion of psychiatry as a specialty supporting the subspecialty of Hospice and Palliative Medicine. The challenge ahead is to further develop strategies for advancing the collaboration between providers of palliative and psychiatric care.

Empty Chair During the Holy Days!

Getting ready for the 16th Thanksgiving after Papa death has continuously been
hard to continue to keep the faith of his blessings upon me. How would I possibly celebrate the Holy Days without him and a very special friend whose specialness will be restored. This Is a prayer to have Papa's spirit bring a wonderfulness of a beautiful memory to all of his children and grandchildren with having the Special Friend return become the greatest gift of the Holy Days.  How could I face preparing the meals he taught to prepare Better then better before the families arrived for the Holy Days Celebrations.

Of course, my siblings and I have become success, since Papa's death.  For this we have elected to keep a chair at our table; the absence of Papa and the Special Friend will not be overlooked.

As the years have gone by, the loss has become less painful. Now our memories of Papa and others who’ve passed out of our lives are laced with humor and nostalgia.  The chairs are empty.  And yet,  the relationships with the people who once occupied them continue on in our shared memories and stories.

To negotiate through the first holiday season following a death is seldom uncomplicated. Although the traditions that evolve in subsequent years may be fine in their own way, holy days without our loved one will never be quite the same.  The holy days after a recent death highlight the absence and often throw people into confusion.  Grieving people know they should “move on” – whatever that means – but aren’t at all sure they want to and don’t know how. Those who care about the person in mourning want to be helpful but are equally confused about how to do it.  It’s a situation that is poignantly human.

For those of you who have lost a loved one within the past year, thinking about the empty chair at the holy day table may intensify grief in all its complex manifestations: sadness, anger, resentment, and maybe even guilt about the loss and, yes, joy and sweetness and gratitude that the person was in your life.  For those who care about the grieving person, it can be difficult to know how best to honor the memory contributing to pain.

Grief counselors generally agree on some basic guidelines that can help you manage a personal loss or help you support those in mourning during the Christmas season.

If you are the grieving person:

• Allow yourself the right to grieve.   American culture has a tough time with death. For some reason, there is pressure to get on with life within a year after a loss.  That expectation is unrealistic and unfair.  Most people take three to five years to fully accept the loss of someone they loved.  If someone dear to you died during this past year, remind yourself that it’s normal and healthy to want to bow out of some of the events of the winter holidays that emphasize family and togetherness when you are feeling alone in a new and painful way.
  
  
• Take care of yourself.   Discipline yourself to get enough sleep, to eat right, and to follow your normal routines – especially if you don’t feel like it.   You’ll be better able to make good decision about what makes sense for you to do over the Christmas season.
  
  
• Plan ahead.    Do you want to be alone or will being with those who love you ease the pain?   Really think about it.   Sometimes being alone makes the arcaneness much too hard to bear.   Sometimes being in a crowd is overwhelming.   Only you know what is best for you.   Talk to key family members and ask them to support you in whichever decision you make.
  
  
• Rethink hosting the party.   If yours is the usual gathering place, think about whether you want to do it this year.  Some people like getting lost in the details of planning and managing a dinner for twelve.  But if you are one of those who finds it just too hard to make a party when in mourning, know that it’s okay to be “selfish” in times like these and to beg off.   People who love you will understand.   Those who don’t aren’t worth worrying about.   At the very least, ask for help and accept all offers to spread the responsibilities around.
  
  
• Give people permission to share stories.  Many people have the idea that the best way to help someone in grief is to avoid talking about the person who has passed. Most of the time, they are mistaken.  When we stop talking about someone is when they are really lost to the family.  Let people know that as hard as it is that the person is no longer with us, it’s important to remember the good times, to laugh about funny things they did or said, and to acknowledge that he or she is missed.
  
  
• Do things a little differently.   For some people, doing the usual traditions and celebrations makes the loved one’s absence all the more painful.  Think about whether doing things a bit differently or going to a different place would be helpful.
  

If you are a family member or friend of someone who is grieving:

• Allow the person the right to grieve.    Everyone does it differently. Some people want to withdraw from the world and work through their sadness alone.   At the other end of the spectrum are those who manage by carrying on as usual and tempering the pain through the distraction of people and parties.   Carefully consider what your loved one needs, not what you would do in the situation.
  
  
• Take care.   If you notice that your family member or friend isn’t eating, getting enough sleep, or functioning well at home and work, don’t ignore it.   These are signs that the person is possibly getting clinically depressed.   Invite the person to a meal. Talk to her about the importance of maintaining routines.   If her inability to take care of herself is prolonged,  do what you can to get her to a counselor (Dr. Losito).
  
  
• Plan ahead.  Ask the person in mourning what he-she wants to have happen at family events.  How would he like to acknowledge the loss and at the same time keep the holy days going for everyone?  Some families literally set an empty place at the table and take a moment to share anecdotes about the person who has passed away. Others make a toast to the memories.   Still others offer a prayer.   Talk together about what will feel best for everyone involved.
  
  
• Offer help.   If the grieving person is the one who usually hosts family gatherings, see if someone else can offer to do it this year.  If he-she wants to keep up the tradition, get as many family members as possible to help with the shopping, cooking, cleaning, decorating, and whatever else needs to be done.
  
  
• Talk to the grieving person about the loss.   Listen without judgment.  Resist giving advice.  Just be there.   Understand that grief comes and goes in intensity and frequency for quite awhile.  It is by talking and listening that we all integrate sadness and gradually move on.
  
  
• Try out a new activity that was never shared by the person who is gone. It’s helpful to do some things that aren’t shadowed by the fact that the last time we did them, the deceased person shared it.   If people like the new ideas, they can become part of the family tradition.  Or not.  Leave that decision for next year.
  

Time does indeed heal most things.  But everyone has his or her own sense of timing.  If this is your first Christmas season since the loss of a loved one, give yourself permission to feel what you need to feel and do what you need to do to get through it.  Find ways to honor the memory of your loved one and to accept the support and care of those who love you.

If you are a friend or family member of someone who is grieving, give them support, love, and concrete assistance.  By talking about their loved one and by listening to their stories and feelings, you help reassure them that the sadness may fade but our relationships with people we love never really ends.