Psychosocial, spiritual issues and bereavement

The dying person
The end of life is an emotional time. Emotional reactions can vary considerably. Some people adamantly refuse to discuss the issue of death. Some people are satisfied with their life’s work and accept the dying process. Patients may suffer from severe depression or be immobilized by fear. Counseling and support groups can be of great help to people who are facing the end of life

Those who work with patients at the end of life need to assess the patient’s attitude toward dying and respect belief systems that are different from their own. It is important to attempt to relieve suffering as much as possible within the framework of the patient's beliefs.

The nature of the relationship between the dying person and others present will determine the type of reaction a nurse will see when working with the patient and his or her family. Not all families are happy ones and grieving the loss of the patient. In some cases, there is a deep sense of loss by the family. In others, there is ambivalence.

Patients and/or families often have practical issues to deal with, such as financial difficulties, food preparation, cleaning, even getting the mail or paying bills. If patients have dependent children, they may have deep anxiety about what will happen to their children when they die, especially if there is no one else available to raise the children. Spouses may be unprepared to assume responsibility for home and family and feel desperate. Helping people to deal with these types of issues can be critical to their peace of mind.

Surge of energy
It is possible an unconscious dying patient may briefly sit up and start talking. This can be confusing to family members. They may think the patient is not dying and want to resuscitate the dying person. This surge of energy is brief and often a normal part of dying. It provides one more opportunity for the saying of final goodbyes. (For more information on this topic see the course on Caring for the Patient Experiencing a Near-Death or Other Transpersonal Event)

Choosing the moment of death
Some patients will wait to die until a loved one has reached them. Some patients wait until everyone has left the room. As much as we in the medical field think we have control over life and death, it is the patient that often makes the choice about that final moment.

The family and friends of the dying patient will more than likely suffer a loss. They will experience the stages of grief described years ago by Dr. Kubler Ross. They may also experience emotional pain caused by the loss. In cases of long term illnesses, the family often starts the grieving process before the person has physically died. This is, for example, often the case with patient with Alzheimer’s disease. Family members can be at different stages of grief when the person dies. Do not expect the moment of death to be what triggers the grieving process. It is important to assess the stage of grief as described by the family members.

A bereavement visit is carried out by a nurse, clergy or social worker. That visit provides an opportunity for the family to talk about the moment of death as well as their life since the death of their loved one. Bereavement support groups are also provided by the clergy or social worker.

On occasion a family member will see, hear or feel the presence of the deceased. This is a common occurrence referred to as and after death communication (ADC). Once this occurs, typically grieving stops spontaneously.

The Guggenheims (1995) describe twelve common types of ADCs: sensing a presence, hearing a voice, feeling a touch, smelling a fragrance, partial appearances, full appearances, ADC visions, twilight ADCs, sleep-state ADCs, telephone ADCs, ADCs of physical phenomena and symbolic ADCs.  They also report 79% of the cases occur to individuals who have a close emotional connection to the deceased.  Sometimes, to the dismay of family members, the ADCs occur to more distant health professionals or friends.  Here is a case reported by Lawrence (2015) of an ADC occurring to a nurse after her patient died.

Charlene, a hospice nurse, made her daily visit to Sam to monitor his pain level and his emotional status. He seemed comfortable. Since she had known him, he had been in a hospital bed downstairs in the dining room of his house, a converted bedroom. His wife told Charlene he had finished telling her how to manage the finances in the house, which he had so deftly done all their 43 years of marriage.

That evening Charlene was reading in bed before sleep. The phone rang. The evening hospice nurse called to tell her Sam had died. A feeling of sadness covered Charlene. She reached over to turn out the lights, when Sam appeared at the foot of her bed. He had forgotten to tell his wife about insurance papers he had left in an upstairs bureau. Charlene had not been upstairs in the house but Sam gave her specific instructions about the location of the bureau and the papers. Charlene assured him she would visit his wife and find the papers. Sam then left as quickly as he had arrived. After the funeral, Charlene followed up with a bereavement visit to Sam’s wife. She informed her of the visit she had had from Sam. Curious, they both went upstairs to the bedroom Sam and his wife had shared. Charlene recognized the bureau from Sam’s description and found the insurance papers tucked in a book in the middle drawer (Lawrence, 2015).

It is important to validate these experiences for family members. They assist with the grieving process. There is no research showing these experiences to be denial or a way of avoiding grief.

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The moment of death triggers the grieving process

Special care for the remaining spouse.

There are numerous accounts of couples who have died shortly, usually within six months, of each other.  Some of these reports involve an unexpected death of the surviving spouse.  The explanation for these deaths range from the spiritual intertwining of souls to extreme grief response.       

Most doctors and scientists believe the healthier spouse’s death is due to the physical stress of losing a loved one.  The phenomena has been romanticized somewhat by referring to it as the Broken Heart Syndrome, more professionally known as Takatsubo cardiomyopathy.  Severe stress, particularly in postmenopausal women, can result in the left ventricle of the heart taking on a balloon-like appearance.  This is a treatable and reversible condition (Nykamp & Titak, 2010).  It is extremely important the surviving spouse be provided comfort, support and medical care.  Grief can be physiologically devastating as well as psychologically so.