By Pamela D. Wilson, CSA, MS, BS/BA, CG
Client care situations typically involve various medical and non-medical providers (hereafter referred to as care partners), family caregivers or a responsible legal party who may be a power of attorney, guardian or conservator. In many cases, care partners work independently to set their own goals for the care of the client without communicating with family caregivers or the responsible legal party. When care situations are complex, heightened sensitivity to professional conduct and personal ethics supports teamwork and problem resolution by care partners. Professionalism is especially relevant in serving care recipients diagnosed with dementia, a brain injury or other cognitive disorder who may appear capable to make their own decisions but who have a responsible legal party acting in the role of decision maker.
When care partners are involved, there may be guidelines or parameters for the services provided through Medicare, Medicaid or other federal or state regulations. If a family caregiver is the responsible legal party, inexperience in navigating caregiving and the health care system often results in significant frustration. Family caregivers often feel that care partners lack understanding and compassion and that care partners fail to support the needs of the family and the care recipient.
Many family caregivers lack conflict resolution, problem solving and planning skills. Family members are easily intimidated in situations of care. As a result they fail to ask questions or to provide important information that might support planning for a loved one’s care. Instead family caregivers wait for information from care partners and then are shocked and angry when Medicare fails to pay for care needs. Other common surprises include notice from care partners that a loved one will be discharged from the hospital or nursing home to return home.
If there is a legally responsible party (a family caregiver or professional) who understands the duties and responsibilities it may be surprising that this role is rarely understood or acknowledged by care partners. Care partners fail to question whether a client has the ability to make decisions for him or herself. The role and responsibilities of power of attorney, guardian or conservator are not commonly understood or acknowledged by care partners. Incapacitated clients are requested to sign hospital and care admission forms when they have no legal capacity to do so.
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- A home health care company reimbursed by Medicare or Medicaid must follow specific guidelines. For example if visits occur in the home, the client must be considered “home bound” to receive services.
- Assisted living community and staff are regulated by state guidelines. For example: patient/client choice and autonomy are supported versus the desire of family caregivers.
- The care provided by skilled nursing communities and hospitals falls under strict regulations requiring medical necessity or functional progress; terms not always understood by families.
- An individual who is in the role of court appointed guardian or power of attorney has legal responsibility and accountability to the court. For example: the guardian’s wishes relative to care supersede wishes of the client. This may result in conflicted feelings on the part of care partners.
Relationships between family caregivers and care partners are challenged when care partners fail to establish common goals to coordinate care and oversight with the family through formal communication methods. On the other hand, family caregivers may not understand the parameters under which care partners work resulting in conflicting desires and disagreements relative to care. This dynamic commonly occurs because:
- Family members lack caregiving experience
- Family caregivers have little understanding of the parameters of the health care system, insurance providers, hospitals, care communities, home care etc. and do not understand how regulations may affect the care provided
- Family caregivers don’t know what they don’t know. They fail to ask questions that may allow planning or problem solving
Care partners lack understanding of the responsibility and accountability of legally responsible parties:
- In some cases, depending on the level of experience (professional vs. family), legally responsible parties expect more than “minimum care standards”, thus this person may appear more demanding than a typical family caregiver.
- Experienced legally responsible parties may pursue the best option regardless of the degree of difficulty or complexity. This may result in more time or effort requested from care partners’ whose time is already stretched thin.
- Legally responsible parties are expected to work in the best interest of the care recipient knowing that the actions they pursue may be against the wishes of the individual. This may result in care partner disagreement or discomfort due to personal or emotional involvement with the care recipient.
Case Study Background:
The following is a case study compiled from historical information, situations of care, research and recommendations to support teamwork in a care situation. This situation involves care partners working within industry standards and/or licensing parameters. At times the care recipient’s well-being and health were placed at risk by care partners believing themselves to be working to support the wishes or best interests of the care recipient. These care partners lacked full understanding of the responsibility, accountability and care goals of the legally responsible party, a guardian, and of the inability of the care recipient to make appropriate decisions.
Care partner concerns that resulted in risk to the care recipient were:
- lack of competence and/or education relative to working with complicated clients and care situations
- factors of personal motivation and emotional involvement
- inability to set and maintain professional boundaries resulting in behaviors of elder abuse
- failure to thoroughly investigate a complicated medical history
- failure to follow the direction of the guardian
- lack of understanding of the responsibility and accountability of the guardian
Client Situation and Background
Ms. Z. was appointed a permanent guardian and conservator in 2011; without restrictions. The court order states, “Ms. Z. has a diagnoses of dementia, four prior strokes and is unable to make reasonable or safe decisions regarding her care, medication management or placement.”
Court appointment is supported by recommendations of physicians who agree that the individual is unable to provide for their own safety and welfare and lacks the ability to evaluate information and make appropriate and reasonable decisions. In most cases, the individual for whom a guardian is appointed disagrees with the appointment, believing he or she is fully able to manage day to day life when this is documented not to be the case.
To others lacking experience in working with individuals deemed “legally incapacitated”, the person may appear perfectly normal and capable to make decisions. In this case, failure to acknowledge and understand the legal appointment of a guardian and the reasons behind the appointment, resulted in care partners complicating the care situation and providing inappropriate care because of their own personal beliefs, values and choices.
At the time of the guardian appointment, Ms. Z. lived in a private apartment with boxes and items stacked to the ceiling, a narrow path existed from the kitchen to the bathroom to the bedroom. All other free space was filled with clutter and boxes. In addition to the diagnoses of dementia and other health issues, Ms. Z. exhibited hoarding behaviors often associated with a behavioral health diagnoses. Mrs. Z’s health was compromised. She was not eating properly, experienced frequent hospitalizations and refused medical attention.
Ms. Z. had a long list of diagnoses, health complications and allergies to both medications and food. She had been over prescribed medications and was hospitalized in the past due to the prescription of multiple and conflicting pain medications by different providers. She had been hospitalized in the past for eating foods that resulted in vomiting and gastrointestinal issues as the result of food allergies. For this reason, the guardian controlled Ms. Z.’s medication list closely and did not approve care partners to make changes without prior discussion and permission. Additionally the guardian supported food restrictions for items that resulted in negative health consequences i.e. illness and costly emergency hospitalizations.
Ms. Z. exhibited behaviors resulting in significant issues related to medical care, living environment and interpersonal relationships with care partners. Due to dementia, a personality disorder, hearing and vision deficits Ms. Z. had a history of accusing any individual in her presence of theft.
Ms. Z. was asked to leave, by the first assisted living where she resided, specifically for accusing staff of stealing medication; she dropped pills on the floor under the bed multiple times and could not find the pills because of poor vision. She was verbally abusive and exhibited inappropriate behaviors to staff and management.
Similar issues with accusations of theft were experienced at the second assisted living. Ms. Z. frequently called the police on caregiving staff, who after investigation, were found to be innocent. The items in question were found in Ms. Z.’s closet or in her room under piles of clothing. Ms. Z. refused to become involved with other residents and isolated in her room, similar to the experience in her private apartment. She was hospitalized due to dehydration and a urinary tract infection and was asked not to return by assisted living staff.
Research indicates accusations of theft to be a common behavioral trait of individuals with dementia and sensory deficits who commonly experience paranoia. While little can be done to change the behavior, the behavior results in significant interpersonal issues between care partners working with Ms. Z. who are easily led by stories and the provision of inaccurate information to lay guilt, accusations and blame on others.
In other situations, care partner interpretation and response to Ms. Z’s actions resulted in care complications. While at a rehabilitation community to support physical strength, Ms. Z. became delusional, reporting that she was seeing her husband and son (both deceased). The care partner staff heard Ms. Z. have conversations with family saying that “she missed them and it would be nice to see them again.” Ms. Z’s oxygen levels declined into the low 80’s. The guardian’s assistant received a call from the staff who reported that Ms. Z. was “actively dying” and questioned whether the guardian wished for Ms. Z. to be sent to the emergency room. The assistant directed the care staff to send Mrs. Z. to the hospital emergency room immediately as orders were on file.
After receiving a call from the assistant, the guardian contacted the rehabilitation community staff to question why the order on file was not immediately followed. On file at the rehabilitation community was a MOST form indicating that the guardian did want Ms. Z. transferred immediately to the hospital, with no phone call required prior to completing this action, in the event of a significant change in condition. The guardian asked the rehabilitation community staff why they questioned the written order. They replied that based on what the nursing staff saw and heard, they were certain Ms. Z. was actively dying and they wanted to “let her go” see her husband and son. It should be noted that Ms. Z. was not on hospice.
The guardian re-confirmed that directions in the MOST form were to be followed and reported that Ms. Z. frequently becomes delusional when experiencing a urinary tract infection or pneumonia, neither of which the rehabilitation community investigated. Later that day at the hospital Ms. Z. was confirmed to have both diagnoses. She was treated at the hospital and returned to the rehabilitation center for a brief period of time.
After treatment at the rehabilitation center, Ms. Z. was relocated to a small assisted living community as recommended by her physician and a treating psychologist. Complicating the transition to the small assisted living community, were Ms. Z’s past behaviors. Ms. Z readily preyed on new and uninformed care partners i.e. physical therapists, social workers etc. by telling stories to care partners about being mistreated and all the actions others took to make her life miserable, thus engaging the care partners in behaviors of misguided advocacy. As described below, Ms. Z’s actions resulted in time and expense on the part of the guardian to provide Ms. Z’s history to all new providers and to train care partners in appropriate responses to her behaviors.
Community and Care Situation
Ms. Z. lived at Tall Trees Assisted Living since mid-2012 after experiencing a hospitalization and subsequent skilled nursing stay for rehabilitation. Discussions were held between Tall Trees Assisted Living staff and the guardian regarding “patient rights” under the basis of a guardianship. The guardian is responsible for managing Ms. Z.’s health and well-being while also being fiscally responsible to avoid unnecessary hospitalizations and costly medical care. Since 2010, Ms. Z. experienced 16 hospitalizations. Because of the guardianship it was acknowledged that Ms. Z. was unable to make decisions in her best interest. Thus it was the sole responsibility of the guardian to make decisions relative to Ms. Z.’s health, well-being and placement. Even though the responsibilities of a guardian were explained to the Tall Trees staff multiple times, the staff’s personal relationship with Ms. Z. resulted in lack of support in fulfilling the wishes and directions of the guardian relative to care goals for Ms. Z including avoiding food products containing lactose and chocolate.
Prior discussions relative to care guidelines and behavioral issues occurred between the guardian and Tall Trees Assisted Living staff. These guidelines were re-stated at a care conference in February 2013. Concerns were expressed by the guardian regarding the staff of Tall Trees increasingly becoming enmeshed in Ms. Z.’s emotional and behavioral disorder as evidenced by staff’s desire to “speak for Ms. Z.” rather than putting Ms. Z. on the telephone or directing Ms. Z. to express her concerns directly to the guardian or the person in question.
Participation by Tall Trees staff in speaking for Ms. Z. resulted in “triangulation”, the act of setting into opposition the care partner, Ms. Z. and the guardian, making teamwork difficult. Care partners lacking experience in working with individuals with personality disorders are easily drawn into situations of triangulation, which are difficult to avoid because of Ms. Z.’s persuasive and believable manner. However, participation in behaviors that contribute to divisive relationships must be avoided by care partners who must learn the skill of behavioral modification.
Care partners frequently become personally involved or over attached to care recipients, feeling that their responsibility is to advocate when this action may result in greater conflict. Other times care partners are fearful of angering a care recipient so they actively participate in and support negative behaviors failing to realize the consequences.
The solution to challenges experienced in situations similar to Ms. Z.’s is ongoing education and reinforcement of behavioral boundaries on the part of the staff of Tall Trees Assisted Living and other care partners with the understanding that Ms. Z. will continue to exhibit negative and divisive behaviors. Support and participation in divisive behaviors will not occur if the behaviors are one-sided, i.e. limited to Ms. Z. In this situation, resolution was achieved with time and effort devoted to care staff education and training by the guardian at Ms. Z’s expense.
Conflict between Tall Trees Assisted Living and the guardian staff increased in late 2012 and worsened in early 2013. After the care conference in early February, Ms. Z. reported the disappearance of Red Door perfume and 3 pair of slacks to the guardian by telephone, saying she was certain that a member of the guardian staff placed the Red Door perfume in her purse while visiting and snuck out of the assisted living community with her slacks.
The situation was further complicated by participation of Tall Trees Assisted Living staff in a discussion that gave the appearance of representing Ms. Z.’s accusations blaming the guardian staff for taking the items. Unintentional or not, this verbal support resulted in concerns by the guardian that Tall Trees Assisted Living staff had again aligned with Ms. Z. such that the guardian should be under constant suspicion relative to actions and intentions. As Ms. Z’s actions and behaviors were discussed several times prior, a written memo and education regarding the subject was provided by the guardian to Tall Trees management.
The guardian concluded that Ms. Z. would be best served if conversations between Tall Trees Assisted Living and the guardian and staff were specific and limited only to medical and health concerns, not representations of Ms. Z. opinions. Any other conversations by Tall Trees staff to relay information that Ms. Z. was able to relay herself would continue to strain working relationships and were to be avoided. Concerns expressed to Tall Trees Assisted Living staff by Ms. Z. were to be addressed by placing Ms. Z. on the telephone to speak directly with the guardian or a the specific staff member in question.
Ms. Z. was able to express concerns about missing items etc. to the guardian. Any such situations were investigated; however the situation was managed behaviorally in an appropriate method so as not to promote additional accusations of theft.
In the entire time the guardian knew Ms. Z.; all accusations of theft were proven false. All items were located after search. Ms. Z. made accusations of theft regarding the conservator and staff. These accusations were unfounded. The time and emotional investment in repeated situations of alleged theft were nonproductive, ineffective and divisive as Ms. Z. would not change her opinion of what she believed to have occurred. Further discussions dead ended. The Red Door perfume and slacks were discovered in a shopping bag on the floor of Ms. Z’s closet soon after the report of theft.
A separate incident occurred relative to a loan from a Tall Trees Assisted Living staff member to Ms. Z in the amount of $50 for Christmas presents. This incident was investigated and proven to be false. This was an attempt by Ms. Z. to obtain cash from the conservator staff to allegedly “repay” the Tall Trees Assisted Living staff, when in reality Ms. Z. wanted the funds to use herself. Ms. Z. frequently and purposely misrepresents information in order to have her way or to purposely cause issues for others that bring back to her additional personal attention and focus. Ms. Z. enjoys being the center of attention, good or bad.
It is acknowledged that care partners for Ms. Z. were educated, trained, ethically responsible and able to receive and evaluate information. Unfortunately Ms. Z., because of her behaviors, manipulated care partners who lacked firm professional boundaries and the ability to respond appropriately to extremely complicated and challenging behaviors. The ability to respond appropriately to individuals with similar diagnoses as Ms. Z. is not learned in text books but by working with individuals with similar behaviors. Hers is an extremely complicated case for many reasons.
Multiple care partners were “taken in” by Ms. Z.’s appearance, sincerity and attention seeking behavior. These included members of the police department, ombudsman, social workers, home health aides, assisted community living staff and others. Few care partners possessed the ability to identify Ms. Z’s behaviors and to respond by not supporting delusional or irrational behavior. Those who became trapped by Ms. Z’s behaviors were emotionally invested and had great difficult reversing their position of support due to fear of hateful behavior exhibited toward them by Ms. Z. when she realized their unconditional support has diminished. Ms. Z would frequently comment that the “care staff became difficult.” Some care partners had to remove themselves from involvement in her care because they were unable to change their behavioral responses.
Other Complications: The Revolving Door
To support Ms. Z’s care as her mobility became limited, a change to a visiting physician with a nurse practitioner and palliative group nurse practitioner care were added to the care team. In a 4 month time period, both care partners had staff changes. The physician’s group changed nurse practitioners four times. The fourth nurse practitioner teamed with a new palliative care nurse practitioner who became immediately “taken in” by Mrs. Z.
The palliative care nurse practitioner prescribed physical therapy without discussing with the guardian. Ms. Z. refused physical therapy knowing that past efforts showed no results. The palliative care partner also questioned the orders for no lactose or chocolate products believing Ms. Z’s patient rights were being violated. This care partner was not given Ms. Z’s history from her agency and proceeded to incite suspicion of the guardian by the physician group care partner who received Ms. Z’s history from her group but failed to read the document.
The medical care partner failed to return phone calls from the guardian relative to concerns regarding the conduct of the palliative care partner. Ms. Z. was diagnosed with a urinary tract infection. The guardian cautioned the medical care partner, multiple times to consult the prior nurse practitioner and to read Ms. Z’s medical history and records due to multiple complications with medications. The medical care partner ignored the guardian’s request and prescribed a medication to which Ms. Z was allergic. Ms. Z. was sent to the emergency room with dehydration and vomiting. Because of the vomiting Ms. Z. contracted aspiration pneumonia and was hospitalized for nearly a month before returning to Tall Trees.
During this time the guardian again sent Ms. Z’s summary to the medical care partner and to the palliative care group. The medical care partner called the guardian and apologized for being drawn into the deceptive situation and apologized for mis-prescribing a medication that led to Ms. Z being hospitalized for several weeks. Unfortunately Ms. Z. bore the expense of the unnecessary hospitalization.
Behavioral Traits Related to Dementia and Narcissistic Behaviors and Suggested Responses
Behavioral responses by care partners involved in providing Ms. Z.’s daily care and oversight had to change for this situation to become manageable, as Ms. Z.’s behaviors would not change. Below are behavioral traits and suggested responses for care partners. In Ms. Z.’s situation, firm boundaries had to be set and maintained without exception.
It is important to understand and acknowledge that these behaviors represent the presence of an illness in individuals exhibiting these behaviors. Learning to respond appropriately desensitized the situation rather increasing the intensity and related chaos surrounding interactions and the provision of care.
Understand that rationalizing, explaining or trying to ask Ms. Z. to understand the opinions of care staff was not a path to success. Being direct, not dwelling on conversations or situations and placing the responsibility back on Ms. Z. offered greater success but was not a guaranteed solution. The ability to view the situation impartially and to be able to distance oneself from Ms. Z’s emotional outbursts was beneficial to care partner success.
Recommendations for Behavioral Responses to Those Involved
It was best for care partners NOT to place themselves in a position where Ms. Z.’s words or actions were taken personally. Because of the cognitive and mental diagnosis it was very likely that at any given point in time Ms. Z would call care partners names, insult ethnic backgrounds, make racial comments, tell lies about an action (done or not done) or make unpleasant comments to purposely hurt feelings. She exhibited these behaviors regularly and without insight relative to consequences. She failed to realize that her behaviors drove care partners away from involvement with her or resulted in her not getting what she desired. In other cases driving people away is exactly what Ms. Z. desired. If a care partner left, then Ms. Z received the desired outcome, for example the permission or item the care partner may have been withholding.
- Attention seeking: craving or demanding attention in a positive or negative manner. This behavior stems from low self-esteem, jealousy that someone else is receiving attention, narcissism or arrogance.
- Respond once to a situation and then do not allow repeated conversations. Do this by saying “we’ve already discussed that”, “that subject isn’t negotiable” or simply change the subject and refuse to speak further about the issue. This action sets the boundary that the care partner will not be caught up in circling conversations that are not positive.
- Inability to take responsibility for one’s actions or situation but rather blame others. For example, “this person is doing this to me” (never “I am doing this to myself”). Seeks empathy and pity, “oh poor me look at what they’re doing to me”.
- Reply with “no one is doing anything to you. We all have and make choices.” End of conversation. Do not allow Ms. Z. to put the responsibility and blame back on the care partner or another person. She is an expert at placing the responsibility of her actions or her situation on others who then feel guilty and become emotionally invested and involved in the outcome of the situation.
- Triangulation: the inability to directly confront or speak with one individual. This means avoiding the individual in question to provide information to gain support from others. The other sympathetic, involved individuals then speak, represent or advocate for Ms. Z.
- Never express the opinions of another; allow and promote Ms. Z. to speak only for her.
- Never pass along ‘third-party’ information (also called hearsay). If you weren’t present and involved in the conversation, the information you may be passing along may be inaccurate and result in more harm than good.” Don’t provide information unless you have verified the information to be 100% accurate.
- Never assume you know the intentions of another person. Do not threaten Ms. Z. in the hope of motivating her to do something. Do not say, “X” will do that Ms. Z. if you don’t do this. You are participating in setting up two opposing sides to fuel a disagreement and have become a participant in making verbal threats (elder abuse).
- Disregard for the feelings of others.
- Stop unkind statements or words about another person by saying, “I refuse to listen to this, let’s put XYZ on the phone so you can express your opinions directly to them.” Care partner participation indicates agreement to Ms. Z. and is disrespectful to the person who is being spoken about who is not present to provide information. Just as you would hope others do not talk about you negatively when you are not present, do not participate in this behavior.
- Ms. Z. will make statements “you are mean, you are fat, you took my jewelry.” Let her know you feel she is making an unkind comment or that you disagree with her accusation. Be clear that you will not carry on this conversation unless the subject is changed. Walk away and let her know when she has something kind to say you will be available to listen but that you will not accept her insults.
- A sense of demanding or expectation of things or actions by others, a desire to be waited on. Example: Ms. Z. “dropping” a Kleenex on the floor and expecting the care partner to pick it up. Ms. Z. will drop Kleenexes on the floor when she is upset and wants to express displeasure or when she wants attention. This is a “pay attention to me” event.
- Do not enable “wait on me” behavior. Encourage independence.
- Leave the Kleenexes on the floor and give her a “grabber” so she can pick up the Kleenex herself.
- Self-centeredness, lack of empathy or sensitivity to the feelings of others. Evidenced by Ms. Z. spending a significant amount of time talking about her with little interest in others.
- At the dinner table say something like, “Ms. Z., someone else might want to share information”, or “the dinner table is for polite and positive conversation, if you can’t say something positive please hold your comments for later.” Again don’t promote negative behavior by ignoring the occurrence, redirect the conversation.
- If necessary, let Ms. Z. know you will physically remove her from the dining table by rolling her wheelchair and her into another room.
- Exploitative behavior as evidenced by manipulation, exploitation or sabotaging others. For example you provide personal information to Ms. Z. who then uses it against you to weave or combine a story that makes you look ineffective or weak. Self-disclosure, unless there is truly a benefit, is rarely beneficial.
- Never share personal information with Ms. Z. or any client. Ms. Z. will at some point use the information against a care partner by telling inaccurate stories and lies to others at the time she becomes upset or angry.
- If you provide information (self-disclosure) understand that Ms. Z. will pass along information you give her to others. Understand that no information is private.
- Don’t place yourself in a personal relationship with Ms. Z. where anything she says or does results in you feeling personally attacked. Set firm boundaries to protect your emotions.
- Paranoid and accusatory behaviors, accusations of theft and wrongdoing by others.
- Same as the above. When Ms. Z. does not receive what she wants, everyone else becomes the bad person who did this or that to her. This provides attention and elicits sympathy from others not directly involved adding more support to a behavioral situation.
- Walk away and do not engage in these conversations.
- Tell Ms. Z. that she must speak directly to the individual in question; you will NOT speak for her.
- Forgets information when convenient or responds that they the information has never been provided.
- This is usually when Ms. Z. may realize she was wrong in providing information or when she disagrees with another person.
- Ms. Z. will also refuse to give you information if she feels she will implicate herself.
- Inability to understand sequential or consequential explanations or information.
- Same as the above, oh poor me, no one ever told me.
- “How would I know that’s what would happen”, again denial about the consequences of actions and how others might be affected.
Situations like Ms. Z’s where multiple care partners are involved will become more common as the population ages. Care partners, family and responsible parties involved benefit from understanding the background and behaviors of the care recipient. It is also important to understand family caregiver background history and motivations and the same for care partners. Care partners must seek to change behavioral responses and to become more educated about complicated care situations so that rather than contributing to chaos, support to resolve complicated care situations may be offered.
Responsibility for the care plan, identifying concerns and making plans for resolution belongs to the family caregiver or legally responsible party. Many times family members are unable to take these actions and rely on professionals to serve in this role. When beneficial, the family or responsible party should retain the services of an independent case manager or care navigator to develop the care plan, implement actions and to provide oversight. These individuals have experience in similar situations and can work together with care partners toward resolution.
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