Hospice Patients Alliance: Consumer Advocates

Dealing with Families in Conflict
Hospice Staff Roles in Protecting
Patient and Family Interests

The Hospice Plan of Care

Hospice workers work closely with family members and the patient to create a plan of care which meets the needs (related to the terminal illness) of the patient and family. This is a requirement of the regulations governing hospice:

42 CFR ch. iv. sec. 418.58 Plan of care:

".... (c) The plan [of care] must include an assessment of the individual's needs and identification of the services including the management of discomfort and symptom relief. It must state in detail the scope and frequency of services needed to meet the patient's and family's needs."
[emphasis added]

Families in Conflict

When family members disagree about the goal of hospice care, hospice professionals are placed in a difficult position. "How to establish the plan of care?" is a question commonly encountered when conflicting demands are made upon hospice staff. In some cases, the quiet, subdued and often grieving family may remain silent while a domineering family aggressor takes over.

It is the RN case manager and professional medical social worker who are most responsible for assessing these family conflicts and investigating the true wishes of the patient and all family members. Upon entering the home of a dying patient, or meeting with the family at a facility, the hospice professional quickly becomes immersed in conflicting demands from every side, if the family has those types of dynamics. While the goal of hospice workers is not to "fix" families with long histories of family conflict, they must find a way to work with all members of the family to promote the best interests of the patient and that family. Other hospice staff who observe family conflict need to report that conflict to the social worker and RN case manager and keep on advocating for the needs and wishes of the patient.

The assertive and sometimes aggressive family members in such a conflicted family may take over and maneuver themselves into positions of power over the patient's care as well as keeping information to themselves. They may utilize intimidation or even lie to other family members (or the hospice staff) in order to establish their position of power during the end of life phase. Hospice workers can do much good by making sure that it is actually the patient's wish for certain individual members of the family to be actively taking part in the planning of care or actual caregiving.

Family members who are more reserved, quiet and un-assertive may find themselves taking a "back seat" to the more agressive members of the family. In some cases, the patient him or herself may be dominated by the domineering family member. These are difficult waters for any hospice professional to navigate, but it is necessary and sometimes crucial for the welfare of the patient and other family members.

Family Conflicts Sometimes Upsetting to Patient

It is not unheard of for family members to argue while in the presence of the terminally ill patient. Although this is shocking behavior for loving families, other families find conflict and dysfunctional relationships to be the norm. Sadly, in only very rare cases are family members with long-standing interpersonal problems — who are assembled in one place by the imminent death of the hospice patient — actually brought together in spirit. Sometimes these family members may argue about just about anything, including who will inherit which portion of the patient's belongings and estate.

Family members can and also often do strongly disagree about the care to be given the hospice patient. Some members may desire the patient to stay at home to die, while others may favor placing the patient in a facility. Some may favor sedating the patient while others want as little sedation as possible. Some may wish to hasten death to "get it all over" and end the suffering, while others may wish to continue actively treating the disease. Some family members may have tremendous difficulty accepting the fact that their loved one is actually dying, while others have accepted that reality a long time beforehand.

Hospice medical social workers and spiritual counselors may work directly on these issues if family members are receptive to these types of services. Other hospice staff may also touch on these issues. All hospice staff work together to promote effective coping strategies on the part of the family members and beginning to work through some of the grieving that is inevitable. Counselors can help family members deal with their many emotions and grief.

Hospice workers sometimes may personaly witness family members arguing directly in front of a patient who is actively dying, even when the patient can no longer respond or speak to the family. Hospice workers have ample evidence that support the conclusion that most patients are able to hear right up to the very end, even though the patient may no longer be able to speak to anyone. Sometimes these patients may be able to blink an eye in a "yes and no" fashion in response to questions put to them, and in this way hospice workers verify that these patients are still fully conscious and hearing what is going on around them.

For these reasons, hospice professionals will often remind family members that the patient can still hear everything that they are saying while in the room. This reminder is often enough for many families to act more considerately, but there are exceptions, and in those cases, hospice staff have the difficult task of protecting the patient from his or her own family members' sometimes inconsiderate or upsetting comments and/or arguments.

While it may be easier to handle these difficulties in a facility, most hospice care is provided in the home setting. Hospice workers will try to encourage family members to maintain as peaceful an atmosphere as is possible in the area around the patient. When this is not successful, a constant effort on the part of all hospice staff will be needed to try to protect the patient from distressing family disagreements or discussions.

Drug and Alcohol Abusers within Family
May Misuse Narcotics at Bedside

Hospice professionals are quite aware of the potential for abuse of pain relieving narcotics left at the bedside of a terminally ill hospice patient. When there is a history of drug or alcohol abuse in the family, narcotics may need to be "locked up" or secured in some other way so as to prevent the drug addict or alcoholic in the family from accessing the narcotics. The worst danger is that the family member with the drug abuse problem may not truly realize how powerful certain narcotics are and may either overdose and accidentally kill themselves, or come very close to death.

There is a potential for addicts to get the narcotics when others are not looking. Addicts may be family members or even some staff, and if staff, such staff have no place serving in the hospice field, because narcotics are commonly available in hospice. While addicts certainly do not always announce their presence in the family, professional hospice social workers and RN case managers have their "antennae" out to detect patterns of potential abuse by family members or staff.

Sometimes family members will try to hide the facts about a family member's history of drug or alcohol abuse, and not mention a family member's addiction...as part of a pattern of "family secrets." When narcotics come up "missing" or "short," then the RN case manager will have to determine the cause of the missing narcotic. This is why very careful records about amounts of narcotics used are kept, and why any sudden changes in the usage of narcotic dosages must be analyzed by the RN case manager.

Family members are almost always involved in administering the medications to the patient when the patient is no longer able to take these medications by himself. The RN case manager will help to decide which family member would be most reliable in giving medications to the patient. In some cases, a family member may give the patient the same dosage as previously while that family member secretly takes the rest of an increased dosage.

In other cases, a family member may actually take the patient's dose and not give the medication to the patient at all! If a patient is suddenly experiencing a pain crisis, it is normal for the RN to consider calling the physician for an increase in dosage due to increased pain. However, if the pain crisis is due to a family member who has taken part or all of the patient's pain medications, then the RN and social worker have their work "cut out" for them. They will need to do some detective work to determine if the narcotics are in fact being diverted to a family member. In some cases, there may be little evidence that the narcotics are being diverted. All hospice staff need to be very vigilant in reporting any mention of drug abuse (or any unusual behaviors by family members related to the medications in the home) to the RN and medical social worker.

Family Conflict
May Have Life and Death Consequences
Involving Involuntary Euthanasia

In other families, a domineering family member may decide to perform euthanasia and "assist" the terminally ill patient to die sooner than expected, hastening death by giving overdosages of morphine or other narcotics and sedatives. We have received reports of domineering family members arranging with the physician for high dosages of sedatives and morphine to be ordered to "put the patient out of his misery." For more information on hospice and involuntary euthanasia issues, visit our information center.

In some cases, the physician may simply believe he is aggressively treating pain or sedating the patient to avoid discomfort. However, in other cases, the physician becomes an active accomplice to a plan to perform euthanasia, with or without the patient's consent. In these cases, a majority of the family may not only disagree with this plan, but the patient may resist these overdosages. If the hospice staff do not ascertain and respect the wishes of the patient, and simply rely on the information from the domineering member of the family, the patient ends up getting medications which cause his demise without any chance of being able to defend himself.

Need to Keep All Family Members Involved

Some domineering family members take control of the hospice environment, purposely exclude the rest of the family from any involvement in the care, and withhold information about the medications being given to the patient and the actual dosages given. Eventually, domineering family members may achieve their goal of euthanasizing the patient. In actual cases like this, the patient died, devastating other family members, shortening the life of the patient who was not actively dying at the time, and eventually enraging those family members who only later found out that their loved one had been killed.

It is important to note that in the situation explained above, if a hospice professional had questioned other family members, the plan of care would have been modified to respect the patient's and other family members' actual wishes, the patient would have lived much longer. It would only take one hospice worker to prevent an involuntary euthanasia. Whether RN, LPN, home health aide, social worker, counselor or other staff, all have the ability to protect the patient's welfare and further the true mission of hospice: relieving suffering and promoting a death with dignity.

Family members have expressed their need to be informed about the care being given to their loved ones, even though domineering family members had excluded them from the process without the knowledge of the patient. It is not easy for certain family members to speak up or protect their loved ones from domineering and aggressive family members who "bully" them. The hospice professional has the great opportunity and responsibility to protect the patient and the other family members from such bullying. These types of concerns are extremely realistic and can occur in any hospice.

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