Hospice Patients Alliance: Consumer Advocates

Having Trouble within the Family
During End of Life Care?

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.

Family members who have in the past been either adult children of the patient or otherwise related may encounter difficulty in helping the patient, even though that help is needed. There is a time for all things, and the downward spiral of functioning related to a terminal illness is one of those times. Patients who are in denial of their impending death will often resist receiving help from others, protesting that they can do things on their own. Family members need to be firm, yet loving in discussing these issues and making sure that the needs of the patient are being met. When a patient is no longer able to perform certain self-care functions, others must take on that function to help.

The hospice social worker is especially trained and experienced in helping patients and families get through this difficult change. You can call the hospice social worker or speak with the RN case manager to get the social worker involved. Family members who are confronting resistance on the part of their loved one need to be realistic in knowing when they need help in communicating with the patient and resolving any resistance to care.

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.

If you do not receive the assistance you feel is needed to protect the interests of your loved one and the rest of the family, you can speak with the hospice director, medical director, the attending physician or spiritual counselor. Any of these hospice staff may be able to help investigate or observe the problems you are reporting and work with the RN case manager or social worker to arrive at a successful plan that protects the interests of your loved one and the rest of the family.

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 once!

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 his actions!

It is important to recognize that strong narcotic medications which are given for severe pain at the end of life are appropriately given for that purpose. The reduction of suffering at the end of life is one of the main purposes of end of life care. The mere giving of narcotics for pain is not euthanasia, even if the patient dies while receiving the narcotics. In most situations, the patient dies due to the terminal illness and the narcotics were used appropriately to relieve suffering.

However, if you feel that medications are being given which the patient does not wish to receive, does not need at all, or which are being given in overly high dosages, you can speak to the RN case manager, social worker, attending physician, hospice medical director or manager. In some cases, sedatives are given which are not wanted by the patient. If the patient has refused these types of medications, then the hospice RN case manager is required to respect the wishes of the patient himself. For more information about hospice and involuntary euthanasia, visit our information center.

It is very important to communicate your concerns with the RN case manager and your loved one's physician. By speaking with the RN and physician, you can hear appropriate medical explanations of the medications being given, why they are needed and what the plan of care is for your loved one. If you truly believe that euthanasia is about to be committed, already started, or occurred, you can report that directly to the local police, District Attorney in your County, to the State Attorney General or to the United States Attorney's Office in your city or region.

Of course, if you suspect that euthanasia is being planned or even already started, you should also contact an attorney to help your loved one in a time of need. Making your concerns publicly known within the hospice setting to as many people as possible may give the perpetrators of euthanasia reason to stop their actions (to avoid prosecution for murder). You can speak about your concerns to every hospice staff member who visits, to other family members who might agree with your concerns and to the police, and other government attorneys. You have the power to prevent euthanasia or abuse by getting the help needed in the circumstances.

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