Resistance to Accepting Help
One of the most common problems families encounter may be the
resistance of the patient to accept help from other family
members or friends. Terminal illnesses gradually swallow up
one's capabilities to function, just as old age itself may
do. However, while some patients may gracefully adapt to the need
to accept help from others, others strongly resist receiving help
from the family and friends. Pride in having always been able to
do everything for oneself is common. However, a sense of modesty
and feelings of shame related to having others help with normally
private activities can interfere with getting essential
activities of daily living accomplished. Patients will
increasingly need to allow others to help them bathe and also
help with toileting at times.
Domineering Family Members
Dealing with the impending death of a family member is enough
of a burden to handle for anyone. But dealing with another family
member who is possibly abusive, domineering, insensitive or even
violating the law is another matter. In the majority of cases,
other family members support and help one another get through the
difficult process of helping the patient at the end of life.
Working together to provide care, comforting each other, running
errands and cooperating together to meet the needs of the very
difficult situation are the ideal.
Stopping Domineering and Abusive Behaviors
In some families, however, there are domineering family members who may intimidate or manipulate other family members, including the patient. If you are aware of a domineering family member who has inappropriately taken control of the family environment and patient care in your family, then you need to intervene to protect your loved one, even if the perpetrator of the abuse is another family member. If the domineering family member has somehow obtained a medical power of attorney and is forcing your father, mother or other family member into hospice against their will, you can stop it!
You need to get an attorney involved right away for legal advice. If they have called an ambulance to transfer the patient into hospice unwillingly, you can stand there at the door and tell them that they don't have the right to take your mother, father or other family out of the house. If you "make objections, speaking strongly and firmly, many ambulance companies will back off because they don't want to get involved in family disputes.
There are many families who tell us their loved one (usually chronically ill, but not terminal) was put into hospice by some family member who "took over the scene" and rushed it through. They would give anything to go back and be able to stop the transfer of the chronically ill patient into hospice, because what happens (they tell us) is that the stable chronically ill patient somehow died within two weeks! Usually they are given morphine or strong sedatives which put them into a medically induced coma from which they never recover, they don't get nourishment and they die of dehydration or morphine overdosage. Shocking, but sadly more common than one may think.
If the family member is simply domineering and abusing the patient, speak with the hospice RN case manager and especially the hospice medical social worker. Even if you are the "soft-spoken" quiet family member who usually takes a "back seat" when other family members make decisions, you may be the only one able to help your loved one, if you decide to act. You may even save your loved one's life from an untimely death due to euthanasia, if you act promptly. In the case that the social worker was refused by the domineering family member, then you still have a right to request a visit or other contact with the social worker, as a member of the family.
If the domineering family member is not providing needed care
for your terminally-ill loved one, you have the right to speak
with the RN case manager about your concerns in private, even
from another location where your conversation will not be
monitored and where you will not feel intimidated. The hospice RN
case manager and social worker can help protect a patient who is
being "controlled" or manipulated by a domineering
family member against his or her will. However, they can only
help if you bring these issues to their attention.
Getting Access to Information about End of Life Care
In the case where you feel you are being wrongly excluded from
information about the care or medications being given to your
loved one, you can request that information from the RN case
manager and social worker. If the patient is able to speak, he or
she can directly indicate that you are also to be informed about
details of the medications and care being provided by the
hospice. If they refuse to allow you information about what
medications are being given and you believe your loved one is
actually being euthanized, call the police and get an attorney at
Dealing with Impending Euthanasia by a Family Member
While euthanasia is not usually committed in most hospice
settings, a small percentage of physicians do admit to performing
euthanasia. There may be a larger percentage that actually
perform euthanasia without admitting it. A very few nurses and
doctors have actually been convicted of causing death when
performing involuntary euthanasia. That some family members may
support euthanizing terminally ill patients is well documented.
Dr. Jack Kevorkian (now in jail) was a strong proponent of
euthanasia, and some family members, in certain cases, supported
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