Diseases

There remains some controversy about how to best help people survive the loss of a loved one. While many forms of support are available and do help certain individuals, little scientific research has shown clear benefits for any particular approach for grief reactions in general. That is thought to be because each approach to support is so different that it is hard to scientifically compare one to another, intervention procedures are not consistently reported in publications, and the ways these interventions have been studied are flawed. Although there has been some concern that grief counseling for uncomplicated grief sufferers works against bereavement recovery, there is research to the contrary. One approach to treating grief is the dual process model, which endorses the bereavement process as being the dynamic struggle between the pain of the death of the loved one (loss-oriented) and recovery (restoration-oriented). This model of treatment recommends that bereaved individuals alternate between directly working on their loss (confrontation) and taking a break from (avoidance) that process when appropriate. For couples that are grieving the occurrence of a miscarriage, brief professional counseling has been found to be helpful. Quite valuable tips for journaling as an effective way of managing bereavement rather than just stirring up painful feelings are provided by the Center for Journal Therapy. While encouraging those who choose to write a journal to apply no strict rules to the process, some of the ideas encouraged include limiting the time journaling to 15 minutes per day or less to decrease the likelihood of worsening grief, writing how one imagines his or her life will be a year from the date of the loss, and clearly identifying feelings to allow for easier tracking of the individual's grieving process. To help children and adolescents cope emotionally with the death of a friend or family member, it is important to ensure they receive consistent caretaking and frequent interaction with supportive adults. For children of school age and older, appropriate participation in school, social, and extracurricular activities is necessary to a successful resolution of grief. For adolescents, maintaining positive relationships with peers becomes important in helping teens figure out how to deal with grief. Depending on the adolescent, they even may find interactions with peers and family more helpful than formal sources of support like their school counselor. All children and teens can benefit from being reassured that they did not cause their loved one to die, and such reassurance can go a long way toward lessening the developmentally appropriate tendency children and adolescents have for blaming themselves and any angry feelings they may have harbored against their lost loved one for the death. Effective coping tips for grieving are nearly as different and numerous as there are bereaved individuals. The bereaved individual's caring for him/herself through continuing nutritious and regular eating habits, getting extra rest, and communicating with surviving friends and families are some ways for grief sufferers to ease the grief process. The use of supportive structure can also go a long way to helping the aggrieved individual come to terms with their loss. Anything from reciting comforting prayers or affirmations, to returning to established meal and bedtimes, as well as returning to work or school routines can help grieving individuals regain a sense of normalcy in their lives. As death involves the loss of an imperfect relationship involving imperfect individuals, forgiveness of the faults of the lost loved one and of the inherently imperfect relationship between the bereaved and the deceased can go a long way toward healing for the bereaved. While the painful aspects of dealing with death are clear, bereavement sometimes also leads to enhanced personal development.

Although practitioners sometimes use paper and pencil survey tests to determine if a person is suffering from grief, the assessment is usually made by the health-care professional asking questions to assess what symptoms an individual is experiencing, then considering whether he or she is suffering from normal grief, complicated grief, or some other issue. Those questions tend to explore whether there are emotional, physical, and/or social symptoms of grief, and if so, how severe and how long the symptoms have been present. The practitioner may also try to determine what stages of the grief process the person has experienced and what stage currently dominates their feelings at the time of the assessment.

The risk factors for experiencing more serious symptoms of grief for a longer period of time can be related to the physical and emotional health of the survivor before the loss, the relationship between the bereaved and their loved one, as well as to the nature of the death. For example, it is not uncommon for surviving loved ones who had a contentious or strained relationship, or otherwise unresolved issues with the deceased to suffer severe feelings of grief. Parents who have lost their child are at a significantly higher risk of divorce compared to couples that have not. They are also at increased risk for a decline in emotional health, including being psychiatrically hospitalized following the loss. This is a particular risk for mothers who have lost a child. Bereaved individuals who have experienced an unexpected or violent death of a loved one may be at greater risk for suffering from major depression, posttraumatic stress disorder (PTSD), or complicated grief. Major depression is a psychiatric disorder characterized by depression and/or irritability that lasts at least two weeks in a row and is accompanied by a number of other symptoms, like problems with sleep, appetite, weight, concentration, or energy level and may also lead to the sufferer experiencing unjustified guilt, losing interest in activities he or she used to enjoy, or thoughts of wanting to kill themselves or someone else. PTSD refers to a condition that involves the sufferer enduring an experience that significantly threatened their sense of safety or well-being (for example, the suicide or homicide of a loved one), then re-experiencing the event through intrusive memories, physical or emotional reactions, nightmares or flashbacks (feeling as if the trauma is happening again at times when the sufferer is awake); developing a hypersensitivity to events that are normal (for example, being quite irritable, getting startled very easily, having trouble sleeping, or difficulty trusting others); avoiding things that remind the person of the traumatic event (for example, people, places, or things that the sufferer may associate with the death of their loved one) and developing or worsening negative moods or ways of thinking after the traumatic event (for example, trouble recalling an important aspect of the trauma, persistent negative beliefs, blaming oneself or others for the trauma, feeling detached from others, or persistent trouble experiencing positive emotions). Being able to care for a dying loved one tends to promote the healing process for those who are left behind. That care can either be provided at home, in the hospital, or in hospice care. Hospice is a program or facility that provides special care for people whose health has declined to the point that they are near the end of their life. Such programs or facilities also provide special care for their families.

The potential negative effects of a grief reaction can be significant. For example, research shows that about 40% of bereaved people will suffer from some form of anxiety disorder in the first year after the death of a loved one, and there can be up to a 70% increase in death risk of the surviving spouse within the first six months after the death of his or her partner. For these reasons, questionnaires that assess how much stress a person is experiencing usually place the loss of a loved one at the top of the list of the most serious stresses to endure. When considering the death of a loved one, the effects of losing a pet should not be minimized. Pets are often considered another member of the family, and therefore their loss is grieved as well. Making the decision to euthanize (painlessly put to death) the family pet once a family works with their veterinarian to determine that the pet is suffering as a result of their age, specific illness, and/or general declining health can add stress to the bereavement process by leaving family members feeling guilty initially, but if done properly, can help families understand that they spared their beloved pet unnecessary suffering. In addition to grief as an initial reaction to loss, the process can be aggravated by events that remind the bereaved individual of their loved one or the circumstances surrounding their loss. Such events are often referred to as grief triggers. Father's Day or the beginning of the school year may cause the parent who has lost a child (or a child who has lost a parent) to feel distraught. A shared song, television show, or activity can remind the widower of the wife he lost or the child of the grandparent who is no longer living. Watching another child play with a pet may reduce a child whose pet has died to tears.

In order to appreciate the legal aspects of death and dying, it may help to understanding death and the process of dying. In order to declare (pronounce) a person as having died, a physician performs a physical examination to assess that the person shows signs of death, such as the absence of breathing and heartbeat, and the individual does not respond in any way to pain. The doctor then completes a death certificate, which indicates the name, date of birth, and date of death, as well as the location of death and its immediate cause, like stopped breathing (respiration) or heart (cardiac) functioning and the medical condition that is thought to have resulted in the cause of death (for example, infection, cancer, diabetes, bleeding from being shot). Consulting with a legal expert, such as an attorney, is advisable when either planning for or managing the legal matters associated with a death. Some of the major legal issues involved with dying include the person's right to have informed consent to receive or refuse treatment, advance directives, establishing a living will, and making funeral arrangements, if desired. Informed consent, which is required by law for every patient or patient's guardian to give, is the responsibility of treating practitioners to provide that opportunity to patients. It involves the doctor or other health professional explaining to the patient and/or patient's legal guardian the options for treatment of whatever condition from which the individual suffers, the possible benefits as well as risks for each treatment, and why the health professional may be recommending one treatment over another. Furthermore, it is the responsibility of the professional to let their patient know that they have the right to choose whatever treatment they want or to choose to refuse treatment. Particularly when discussing chronic or terminal illness, conditions over which there is little control over the ultimate outcome of care provided, having the individual and his or her family feel as much control over their treatment options as possible is of great importance. Advance directives are those decisions an individual would like to express to his or her family and treating professionals prior to potentially becoming no longer able to communicate their wishes prior to death. Examples of advance directives include what, if any, forms of life support the individual would like to receive to maintain their life, as well as what "heroic" or aggressive interventions, if any, they would like made immediately should their heart or breathing stop. Getting food and liquids through a tube, having their breathing or heart rate performed by a machine, and opting for palliative care (care that will address pain and otherwise make them comfortable rather than try to cure them) are choices a person often considers in terms of what they want done or not done to maintain their life. In the event that the individual expresses a desire to have no heroic or aggressive medical interventions made should their heart beat or breathing stop, a do not resuscitate order (DNR) is indicated in his or her medical chart. Opting for such an order is by no means a request to stop all medical treatment. In other words, managing any condition other than actual loss of life (for example, infections, anemia) will continue. Another important example of an advanced directive is whether or not the dying individual would like to be considered as a possible organ donor. In order to have their medical and financial wishes carried out, it is important for individuals to name a health proxy, someone trusted to make decisions that are in keeping with the individual's in the event that those wishes are unknown and the person can no longer express his or her wishes. In order to formally appoint a health proxy, an attorney must write a durable power of attorney, the legal document appointing the health proxy. In addition to having that document signed, witnessed and notarized, a copy of it must be placed in the individual's medical chart. Similar to the medical power of attorney, a durable power of attorney of finances can be helpful to establish who would be in charge of the person's finances if she or he were living but unable to be in charge of their own financial matters. Last but not least, if the individual has any strong preferences regarding a funeral or whether his or her remains are buried or cremated, making those wishes known in writing can prevent placing the burden of those decisions on surviving family members, who may struggle with agreeing on these issues, particularly as they grieve the loss of their loved one. As painful as it is to watch a loved one die and as difficult as it may be to talk about their death with them before it happens, many are the families who suffer even more than need be because steps are not taken to address these important legal issues.

Perhaps the most well-known model for understanding grief was developed by Elisabeth Kübler-Ross, MD, in her 1969 book titled On Death and Dying. The five stages of the grief cycle that she outlined are

• denial,
• anger,
• bargaining,
• depression,
• acceptance.

These stages also apply to the stages of dying, the grief associated with one's own death. She described the stage of denial as the bereaved having difficulty believing what has happened, the anger phase as the survivor questioning the fairness of the loss, the bargaining stage as wishing to make a deal with fate to gain more time with the one who was or will be lost, the depression stage as the period when the bereaved person gets in touch with how very sad they are about losing their loved one, and acceptance as feeling some resolution to their grief and more ability to go on with their own life. Kübler-Ross apparently felt these phases can be applied to any significant personal loss (for example, of a job, relationship, one's own health, anticipating one's own death), as well as the death of a loved one. It also seems that she believed these stages don't all have to occur, can take place in different order, and can reoccur many times as part of an individual's specific grief process. Other grief experts describe seven stages of grieving, specifically

• shock or disbelief,
• denial,
• bargaining,
• guilt,
• anger,
• depression,
• acceptance/hope.

The shock or disbelief stage is understood as the numbness often associated with initially receiving the news of the death of a loved one. The guilt stage of grief refers to feelings of regret about difficult aspects of the relationship with the deceased. In addition to the emotional pain already discussed, symptoms of grief can be physical, social, cultural, or religious in nature. Physical symptoms can range from mild sleep or appetite problems to heart attack. Social symptoms of bereavement include isolation from other loved ones and difficulty functioning at home, school, and/or at work. For children and adolescents, reactions to the death of a parent or other loved one tend to be consistent with their reaction to any severe stress. Such reactions usually reflect the particular developmental stage of the child or adolescent. For example, since infants up to about 2 years of age cannot yet talk, their reaction to the loss of a loved one tends to involve crying and being more irritable or clingy. They further show physical symptoms of sleep or appetite problems, changes in activity level, and being more watchful of (vigilant toward) their surroundings. Since preschoolers from 3 to 5 years of age begin to be able to remember the one who died but have not yet developed the ability to understand the permanence of death, they may believe they somehow magically caused the death and can make the person come back. In addition to showing signs of grief that are similar to infants, they may have more difficulty separating from caregivers. Early school-aged children, from 6 to 8 years of age, more likely understand that death is permanent compared to younger children, often feel guilt about the death of the loved one, become preoccupied with memories about the departed, and try to master the loss they have suffered by talking about it frequently. While symptoms of grief in school-aged children from 9 to 11 years of age are quite similar to those of early school-aged children, this older group is more vulnerable to a decrease in self-esteem because they feel different from their peers if they have experienced the loss of a loved one. They are also more prone to defend against their feelings of loss by becoming engrossed in school, social, and/or extracurricular activities. In keeping with their budding need for independence, young adolescents 12 to 14 years of age may experience mixed feelings about the deceased individual and exhibit a wide range of emotions. They may avoid talking about the loss. Older teens usually experience grief similarly to adults, enduring sadness, anxiety, and anger. They tend to deny their feelings of loss to parents but discuss them in detail with peers. For children, adolescents, and adults, as with any major stress, grief may cause a person to regress emotionally, in that they go back to former, often less mature ways of thinking, behaving, and coping. Symptoms of complicated grief include intense emotion and longings for the deceased, severely intrusive thoughts about the lost loved one, extreme feelings of isolation and emptiness, avoiding doing things that bring back memories of the departed, new or worsened sleeping problems, and having no interest in activities that the sufferer used to enjoy. Teens tend to react to the loss of a loved one that died through suicide similarly to the ways in which adults experience complicated grief but it is noteworthy that their lack of life experience to draw strength from and high level of involvement with their peers may make teens more vulnerable to contemplating suicide themselves when a loved one commits suicide. Mental health professionals often refer to this type of vulnerability as contagion. Regardless of age, individuals who lose a loved one from suicide are more at risk for becoming preoccupied with the reason for the suicide while wanting to deny or hide the cause of death, wondering if they could have prevented it, feeling blamed for the problems that preceded the suicide, feeling rejected by their loved one, and stigmatized by others.

Grief is the normal internal feeling one experiences in reaction to a loss, while bereavement is the state of experiencing that loss. Although people often suffer emotional pain in response to loss of anything that is very important to them (for example, a job, a friendship or other relationship, one's sense of safety, a home), grief usually refers to the loss of a loved one through death. Grief is quite common, in that three out of four women outlive their spouse, with the average age of becoming a widow being 56 years. More than half of women in the United States are widowed by the time they reach age 65. Every year in the United States, 4% of children under the age of 15 experience the loss of a parent through death. Although not a formal medical diagnosis, prolonged grief, formerly called complicated grief, refers to a reaction to loss that lasts more than one year. It is characterized by the grief reaction intensifying to affect the sufferer's close relationships, disrupting his or her beliefs, and it tends to result in the bereaved experiencing ongoing longing for their deceased loved one. About 15% of bereaved individuals will suffer from complicated grief, and one-third of people already getting mental-health services have been found to suffer from this extended grief reaction. Anticipatory grief is defined as the feelings loved ones have in reaction to knowing that someone they care about is terminally ill. It occurs before the death of the afflicted loved one and can be an important part of the grieving process since this allows time for loved ones to say goodbye to the terminally ill individual, begin to settle affairs, and plan for the funeral or other rituals on behalf of the person who is dying.

As opposed to grief, which refers to how someone may feel the loss of a loved one, mourning is the outward expression of that loss. Mourning usually involves culturally determined rituals that help the bereaved individuals make sense of the end of their loved one's life and give structure to what can feel like a very confusing time. Therefore, while the internal pain of grief is a more universal phenomenon, how people mourn is influenced by their personal, familial, cultural, religious, and societal beliefs and customs. Everything from how families prepare themselves and their loved ones for death, and understand and react to the passing to the practices for preserving memories of the deceased, their funeral or memorial, burial, cremation, or other ways of handling the remains of the deceased is influenced by internal and external factors. The length of time for a formal mourning period and sometimes the amount of bereavement leave people are allowed to take from work is determined by a combination of personal, familial, cultural, religious, and societal factors. Mourning customs also affect how bereaved individuals may feel comfortable seeking support from others as well as the appropriate ways for their friends and family to express sympathy during this time. For example, cultures may differ greatly in how much or how little the aggrieved individual may talk about their loss with friends, family members, and coworkers and may determine whether or not participating in a bereavement support group or psychotherapy is acceptable.

AARP Grief and Loss Programs Offers a variety of programs in which volunteers reach out to widows 601 E Street, NW Washington, DC 20049 202-434-2260 American Society of Suicidology 202-237-2280 Cancer Care, Inc. 275 Seventh Avenue New York, NY 10001 1-800-813-HOPE (4673) http://www.cancercare.org Center for Suicide Prevention 321202 Centre Street, S.E. Calgary, Alberta Canada T2G5A5 403-245-3900 http://www.suicideinfo.ca Compassionate Friends (help following a suicide) 1-877-969-0019 Coalition Against Police Brutality 220 Bagley, Suite 808 Detroit, MI 48226 Tel: 313-963-8116 or 313-399-7345 Email: [email protected] ElderHope, LLC Offers online support, forums, seminars, classes, and bereavement materials PO Box 940822 Plano, TX 75094-0822 972-768-8553 Hospice Foundation of America 1-800-854-3402 http://www.hospicefoundation.org Hospice Education Institute 1-800-331-1620 Mothers Against Drunk Driving 1-800-438-MADD [6233] National Cancer Institute National Hospice and Palliative Care Organization Provides a search for hospice and palliative care, as well as statistics, resources, and information 1700 Diagonal Road, Suite 300 Alexandria, VA 22314 703-837-1500 National Organization for Victim Assistance 1-800-879-6682 National Sudden Infant Death Syndrome Resource Center 1-866-866-7437 Parents of Murdered Children 1-888-818-POMC Parents Without Partners Offers support, information, and resources for single parents 1650 S. Dixie Highway, Suite 510 Boca Raton, FL 33432 516-391-8833 Pet Loss 1-888-332-7738 Samaritan Hospice (Marlton, NJ) Offers several free grief support groups to those who have lost a spouse at a young age and to those grieving the loss of a same-sex partner 1-800-229-8183 [email protected] SHARE Pregnancy and Infant Loss Support, Inc. 1-800-821-6819 Society of Military Widows 1-800-842-3451 The future As researchers continue to examine the management of grief, the level of clarity about what is helpful and not helpful in helping the bereaved needs to be improved. Although hospital personnel have tended over the past decades to address the medical, legal, and emotional issues associated with the loss of a loved one, health-care professionals who work in clinics and private offices would serve their patients better if those issues were addressed long before a crisis of health or loss takes place.