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. Rarely united family
members are often brought together by the imminent death of the
hospice patient. 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 also 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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