Caring for the Family

To provide care in home-care settings, not only the illnesses affecting the patient but also the physical, time-related, and interrelated backdrop surrounding him/her needs to be assessed. The most involved “backdrop” is the family. It is of great importance to provide medical care embracing their existence.

The Family’s Role in Home Medical Care and Caring for the Family

In home-care settings, the family plays diverse roles during the convalescence of the patient. The family members have individually different burdens: some don’t have much stress in their role as a caregiver but feel great strain because plans are left to their discretion, whereas some feel the opposite. While each family member is fulfilling a different role, burdens are accumulated, and one member of the family may collapse because of the stress, which makes it difficult to maintain healthcare and their daily life. This could constitute a major cause of bringing in-home care to a standstill. Therefore, efforts should be made to help reduce their burden in ways tailored to each family member.

The roles of the family can be classified as follows:

A. Role as Caregiver (Role as a Home Caregiver)

In in-home caregiving, the family takes on the role of delivering care such as preparing meals and diapering. While home-visiting care services and home-visiting bathing services are utilized in general to help reduce the family’s burden, things that they perceive as encumbrances are different for each family member according to the family relationship and his/her way of thinking.

Additionally, the burden is felt differently as the physical status of the whole body changes. For instance, some people feel a psychological burden as they change diapers, whereas they experience none of it when assisting in eating or bathing. Or, even though they were usually able to previously change diapers without feeling any difficulties, it turned into a burden as the patient reached terminal stage (although the procedure of diapering remains the same). It is important to formulate care plans on the basis of the understanding of these differences in each family member and to review the plans in accordance with changes in stress.

B. Role in Coping with Changes in Symptoms (Role as a Nurse)

Managing the changes in symptoms is also a role of the family. These changes include providing a rescue dose for pain, inserting a suppository for pyrexia, and contacting health care professionals when an acute change has occurred. In addition, the family often needs to receive an explanation about the medical procedures from a physician, nurse, pharmacist, etc. or practice the skills to perform the procedures. Especially as complicated procedures impose a burden on the family, easy to understand manuals, etc. should be prepared to meet individual needs. If the procedures impose too much stress on the family, switching to the services provided by a home-visiting specialist should be considered.

C. Role in Making Decisions on Behalf of the Patient (Role as a Representative of the Patient)

If the patient is unable to indicate his/her own will, the family takes on the role of making decisions such as future care plans or a decision on admission on the patient’s behalf. The family members—as they are most familiar with the patient’s life history, disposition, and view on life—

can respect the patient’s supposed intention. On the other hand, the family often feels the pressure of being forced to make critical decisions. After all, regarding the major planning of caregiving or the crucial decision in the last stage of life, it is hoped that the patient and the family can

discuss these issues together while the patient is able to communicate with the family rather than handing the burden over to them.

D. Role as the Patient’s Family

The existence of the family, who best understands the patient, plays a significant role in reducing the patient’s mental, social, and spiritual pain as well as in maintaining his/her comfortable convalescent life. However, all the more because they are the patient’s family, conflicts are often caused more than necessary because of requesting excessive caregiving or denying the progression of the illness. On such occasions, the home-visiting nurse, for example, may be able to play the role of the patient’s representative, especially from a mental aspect.

Family Caregiving and Mutual Energy Generation

While the family is playing various roles as described above, the family’s burden increases. For instance, the home-visiting caregiver would ask the family to prepare some articles used for eating assistance or the nurse would let the family manage pyrexia by taking the temperature more often or the physician would tell the family to make a decision whether to admit the patient to the hospital when his/her condition changes. Although each professional individually means to entrust the family with a minor thing, as the requests are accumulated with time, they constitute a significant burden on the family. What is crucial is that the entire team that is involved should collaborate together to ascertain the physical and emotional changes that occur in the family over time. The in-home care specialist team should understand that the family is also a member of the team and should share information with them to ensure unified planning. They should also help the family focus on the role described above under “D,” which is the most remarkable strength the family has.

At times, the family themselves develop illness in their interaction with the sick patient.

However, more often than not, their care helps generate the energy to live in the patient, thereby strengthening the family unity and improving the quality of care. As seen in the latter case, helping the entire family generate energy in each other is what is referred to as the expertise constituting the basis of home medical care.

Grief Care

When in-home terminal care is provided, the family receives grief care.

Grief is a normal response to great loss (caused not only by loss of loved ones but also by death of a pet, divorce, unemployment, fire, etc.) Usually it lasts only temporarily and is not something morbid. Although a variety of symptoms are observed (Table 1), no medical intervention such as administration of medications is required. The process in which the loss is accepted, emotions are organized, and the psychological adaptation to a new environment is made is called grief work. Grief care is to help the grief work continue spontaneously. It is important to inform the individual that having various emotions and symptoms is normal. It should also be remembered that the symptoms may recur on anniversary dates or the death anniversary (anniversary reaction). To assist reminiscing about the deceased, it is suggested that certain opportunities be coordinated as necessary (paying a visit to the family for grief care, organizing an assembling of the bereaved family, etc.) so that they can have a talk.

Table 1. Symptoms of Grief

 Physical symptoms (sleep disorder, impaired appetite, fatigue, feeling of dyspnea, palpitations, headache, etc.)

 Emotional reactions (sorrow, anger, anxiety, lack of motivation, lonely feeling, etc.)

 Behavioral reactions (confusion, decreased mental concentration, etc.)

 Delusional phenomena (auditory hallucination, etc.)

Table 2. Risk of Developing Complicated Grief

 When the individual does not have much help or understanding by others after the loss.

 When the individual is socially/psychologically isolated.

 When the loss was sudden and happened unexpectedly.

 When the previous experience(s) of loss(es) has/have not been resolved.

 When the individual intrinsically holds emotions in check.

However, some people (approximately 10%) develop “complicated grief (pathological grief)”

that should receive drug therapy or psychotherapy. In this status, the appropriate grief work does not begin within a few months after the loss and severe grief symptoms persist for a long time.

It is a condition that hinders one’s life, occasionally leading to depression or alcohol dependence, for which consideration should be taken so that appropriate care is continuously provided. If a risk of developing complicated grief (Table 2) is noted, contacting the individual persistently at an early stage leads to prevention of complications and early detection (even briefly listening to him/her time and again is effective).

(Hiroyuki Beniya)