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D. A. Smith and R. D. Huss
Standards of care were once thought to be unique to a local geographic area but
are now viewed as national in scope. Regulations, clinical practice guidelines, and
evidence-based practice as well as the testimony of expert witnesses, are often used
to establish the standard of care. A breach of a standard of care may be either a matter of omission or commission. Once a malpractice action is initiated, failure to
protect the integrity of the medical record and alterations of the medical record can
be damaging to the defense. Not all breaches of a standard of care will contribute to
causation of harm. It should be recognized that there could be more than one proxi-
mate cause for an injury or poor outcome.
Practitioners should be aware of circumstances that can place them at increased
risk of facility litigation. These can include:
• Inadequate documentation, criticisms, or bickering in the medical record.
• Failure to follow policies and procedures without documentation of a support-
able reason.
• Documentation of care in a manner not concordant with that care.
• Failure to notify the physician and family of changes in condition.
• Outdated and unnecessary policies and procedures.
• Care plans not updated to reect the current condition of the resident and the care
being given.
• Failure to follow the care plan.
• Unrealistic goals in the care plan.
Summary
Ethical and legal issues abound in the everyday practice of post-acute and long-term
care medicine. Practitioners must acquire understanding of medical ethics and the
law in one’s jurisdiction and be able to discuss these issues with the interdisciplinary team, family, and patients in a manner that will foster collaboration and consensus. A skilled and condent practitioner can guide patients, families, and caregivers
through shared medical decision-making. Guidance that will provide clarity, comfort, and consistency to the plan of care within the goals and personal values of the
person receiving that care.
Pearls for the Practitioner
• The principles of health care ethics are autonomy, benecence, justice, non-
malecence, and delity. For ethical decision-making, each principle must be
considered in the context of the others.
• No person loses his/her human rights upon entering a long-term care facility.
• Federal and State regulations require facilities to proactively prevent and address
abuse, neglect, and exploitation.
Ethical andLegal Issues inPost-Acute andLong-Term Care
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• Practitioners in long-term care need to acquire skills to assess mental capacity in
order to determine a person’s ability to make personal, medical, and nancial
decisions in their own best interest.
• End of life issues are common in post-acute and long-term care, and thus practi-
tioners must acquire skills in engaging patients and surrogate decision-makers
and be cognizant of applicable laws.
• While litigation is common in long-term care, for a malpractice action to be suc-
cessfully pursued, all four elements of duty, breach of the standard of care, cau-
sation, and harm (damages) must be proven.
References
1. https://downloads.cms.gov/medicare/Your_Resident. Accessed 5 Aug 21.
2. Sloane P, Yearby R, Konetzka RT, etal. Addressing systemic racism in nursing homes: a time
for action. J Am Med Dir Assoc. 2021;22:886–92.
3. Marson DC, Ingram KK, Cody HA, et al. Assessing the competency of patients with
Alzheimer’s disease under different legal standards. Arch Neurol. 1995;52:949–54.
4. Grisso T, Applebaum PS, Hill-Fotouhi C.The MacCat-T: clinical tool to assess patient’s capac-
ity to make treatment decisions. Psychiatr Serv. 1997;48:1415–9.
5. www.ama- assn.org/ama/pub/physician- resources/medical- ethics. Accessed 5 Aug 21.
6. www.amda.com/governance/papers.cfm. Accessed 5 Aug 21.
7. www.amda.com/governance/resolutions/m03.cfm. Accessed 5 Aug 21.
8. Huss R, Smith DA, Horowitz A. Lessons from litigation: minimizing liability and regulatory
enforcement risk in PALTC.In: AMDA annual conference 2021, virtual.
Working withFamilies
andPerson- Centered Care
DavidBrechtelsbauer
Introduction
Despite efforts to precisely dene PCC [1], its denition remains diverse. In many
PA/LTC communities “culture change” is often interchanged with PCC.The Centers
for Medicare and Medicaid Services (CMS) uses the following to dene “Person-
centered Care”: “means to focus on the resident as the locus of control and support
the resident in making their own choices and having control over their daily lives”
[2]. Use of the word “person” is preferred by advocates of PCC to reinforce the fact
that people residing in these communities are unique individuals while CMS uses
the designation “resident.”
Person-Centered Care: Impact onPatient/Resident
Assessment andCare Planning
Studies are emerging that assess the impacts of PCC on persons and their families.
Studies have generally focused on two long-term care populations, those who are
cognitively intact who can advocate for themselves, and those who have dementia
where family members need to provide relevant information about the person’s history for the development and implement a comprehensive person-centered care
plan. Benets have been noted on psychological wellbeing and Quality of Life
(QoL). Person-centered dementia care decreased behavioral symptoms and
decreased use of psychotropic medications. Family satisfaction has also improved [3].
D. Brechtelsbauer (*)
University of South Dakota Sanford SOM, Sioux Falls, SD, USA
© The Author(s), under exclusive license to Springer Nature
Switzerland AG 2023
P. Winn et al. (eds.), Post-Acute and Long-Term Care Medicine, Current Clinical
Practice, https://doi.org/10.1007/978-3-031-28628-5_16
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D. Brechtelsbauer
Traditionally many families are valuable allies when a loved one is admitted to or
living in a PA/LTC community. Family members can provide emotional support, manage their loved one’s nances, assist with the resident’s ADLs, and participate at care
plan meetings. PCC has changed the family role to “partners” in care who can provide
valuable input to the care planning process by clarifying the residents past medical and
social history, life journey, any post-traumatic events, family customs and traditions,
likes and dislikes, usual daily routine, and personal values and preferences. As to medical decision-making, the family may be able to recount how the resident’s priorities
have determined past medical decisions. The transition from a community residence
or an acute hospitalization to a PA/LTC community can be stressful for family caregivers. They may feel guilty for deciding that the resident transition to a nursing home
instead of continuing to care for a spouse or parent at home. Family members who
may have promised not to put their loved one in a nursing home are particularly conicted. It is necessary for the attending practitioner to address this issue [4]. There are
other practicalities that face family caregivers. The realities of possibly being separated by long distances and having employment and nuclear family obligations can
limit an adult child’s opportunity to actively participate in caregiving. While those
who are able to be involved often feel awkward with the role reversal created when
they nd themselves parenting their parent. Frequently the parent can be distressed
and resentful toward children who are now making decisions for them.
Attitudes
It is pivotal that IDT work with families to examine their own attitude toward families and the issues that commonly arise. Prejudicial assessments, blind spots in
problem solving, and ineffective interventions can result when a health care provider (HCP) is unaware of her/his own beliefs and values contrasted to how families
are dened and how they function. This may unconsciously impact communication
style and decision making. While health care providers are encouraged to set aside
personal biases, feelings about traditional verses nontraditional family structure,
gender roles, locus of decision-making, and lial obligation all can impact a health
care professional’s attitudes and effectiveness when dealing with families.
Some of the discomfort when dealing with family issues probably relates to the
lack of attention to effective communication, particularly with persons other than
the patient. In many professional training programs, the emphasis placed on the
doctor–patient relationship and condentiality is often an attitudinal barrier that
must be recognized and addressed in order to effectively interact with families.
Practitioners who feel they are exclusively responsible to the patient may respond
by avoiding encounters with families, a response that only worsens an issue or situation. Changing from an exclusive focus on the patient to that of the family system
can be helpful. This can promote a collaborative relationship between the IDT and
the family to the benet of the patient/resident and the facility. Other families, due
to personal preference or barriers created by living far away or holding down two
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313
jobs, will want to be informed, but not be able to share in the care of the patient/resident. Unfortunately, a few families have no desire to be involved. It is essential to
determine the level of interest desired by each family, and to periodically determine
if the desired level of involvement has changed to another family member.
A major attitudinal issue is reected in the use of the word “dysfunctional” when
describing a family. Too often this word signals a professional caregiver feeling
hopeless or powerless to intervene in a difcult family situation. Whenever a care
team member utters this word, that person needs to be encouraged to examine what
he/she understands the word to mean and why use of “dysfunctional” is spoken in the
situation at hand. At times dysfunctional may be an accurate description, but dwelling on that aspect of the problem will interfere with problem solving. Cross- cultural
issues can also raise attitudinal issues and create disparity in one’s thinking. Increasing
diversity in the general population (as well as in health care workers and patients/
residents) requires reexamination of systems of care and communication skills.
Knowledge
A physician’s knowledge of the dynamics of the health system can be invaluable to
families and to patients/residents as families vary in their level of experiential
knowledge of the health care system. The public at large generally have little understanding as to the workings of PA/LTC.Family members may harbor negative feelings toward nursing home care. Sharing knowledge of the health care system in a
non-condescending manner is an important rst step in building credibility, rapport,
and trust with the patient/resident and family. Studies have shown that moving into
a PA/LTC community (which for many PA/LTC professionals is considered routine
and straightforward), is often a major stressor for the resident and their family.
Upon resident admission it is helpful to discuss the facility and State policy
regarding restraints as the family likely had observed bedside rails used in the acute
care setting and thought this was a good idea. Learning of the “no restraints” regulations in PA/LTC can cause confusion and resentment for the resident and family.
Explaining the risks of restraints and the indignity restraints will cause to their loved
one may help resolve this contentious issue.
Education of the person and family about PCC can begin with the question, “If I
used the phrase ‘person-centered care’, would that mean anything to you?” If the
answer is “no,” it provides the opportunity to describe the tenets of PCC.If the
answer is “yes,” ask them to share what they know. This will allow practitioners to
address misperceptions. Compassionately guiding the family through the transition
from hospital (or other setting) to the PA/LTC community will enable a positive
beginning to the physician–patient and physician–family relationships. In turn, it
will help foster a collaborative and positive demeanor and relationship between the
professional (formal) and family (informal) caregivers that will help the family
understand its role and the role of the facility’s interdisciplinary team (IDT).
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Subsequent issues that are likely to confront the family and that will need prompt
and proactive efforts by facility practitioners and the IDT include:
• Informing the family of an incident (fall, medication error, skin tear, etc.)
• Notifying the family of an acute change of status (fall with injury, acute illness,
exacerbation of a chronic illness).
• Advising the family of a problematic behavior and its consequences.
• Apprising the family of progressive frailty and that consideration be given to a
focus on palliative care or hospice.
Chronic illness, particularly chronic diseases that impair a person’s function to
the extent that necessitates moving from home to a residential care setting are stressful for the person and the person’s family. Accordingly, it’s vital to inquire about
caregiver stress and distress. Ask the family caregiver, “And how are you doing
with all this?” Encourage family caregivers to take time for themselves and to seek
help if overburdened. Urge participation in a caregiver support group.
Advance Care Planning (ACP) can be stressful to families. Discussion of goals
of care and scope of treatment regularly occur. ACP has shown mixed efcacy. As
such, a series of guidelines have been developed to support a more coherent process
[5]. Recently a consensus denition of ACP has been proposed [6]:
1. Advance care planning is a process that supports adults at any age or stage of
health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.
2. The goal of advance care planning is to help ensure that people receive medical
care that is consistent with their values, goals, and preferences during serious
and chronic illness.
3. For many people, this process may include choosing and preparing another
trusted person or persons to make medical decisions in the event the person can
no longer make his or her own decisions.
A goals of care (GOC) discussion on medical interventions (or not) for those
residents with advanced dementia has shown some efcacy in supporting family
members in end-of-life conversations. The intervention involved a GOC video decision aid plus a structured discussion with nurses, social workers, therapists, and
nutritionist who then create a care plan [7]. Some knowledge of clinical psychology
and family systems is fundamental to effective “working with families.” Full discus-
sion of this is beyond the scope of this chapter. Excellent texts are available [8, 9].
Skills
Skills in “working with families” can be learned and will improve with practice. If
one nds oneself struggling to respond to texts, phone calls, or emails from families,
avoiding family contact, or when unable to attend family meetings or care conferences, it is helpful to nd a person who is skilled and effective in this area. Practicing
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315
these skills under the watchful eye of a mentor, being open to feedback and willing
to try a new approach will lead to improvement. It is important to recognize situations that may be medically complex and emotionally challenging for patient/residents and families as well as clinicians and staff. In such situations it is imperative
to choose one’s words carefully [10]. An unfortunate phrase is “There is nothing
more to do.” To the patient/resident this can sound like abandonment. An alterna-
tive phrase would be “There is nothing more we can do to cure your illness.” Such
a statement opens the door to discuss symptom management, psychosocial and
spiritual support, and other measures that promote comfort and dignity for the person and caring and support for the family.
A similar problematic question posed to patient/residents is, “Would you like us to
do everything?” Clinicians usually are thinking about aggressive ICU level of care.
Families will often answer “yes” to such a question, while clinicians are rather thinking about efforts to relieve pain and suffering, not about a transfer back to the hospital.
A better phrase is, “I recognize your mother is in distress, and of course that is upset-
ting for you. I don’t think sending her to the hospital for more tests and treatments
would resolve her distress, let me explain what we can do here, working with nurses
and other staff members who know your mother well. I think we can get her pain (or
any distressing symptom) under better control.” You may want to add the phrase “I will
write orders for aggressive symptom management.” There are times when a patient/
resident may need to be admitted to hospital for symptom control, but many symptoms
can be successfully managed by the practitioner and skilled nursing facility IDT without hospitalization. The physician’s awareness of the level of expertise and condence
(or not) of the staff needs to be assessed to ensure the needs of the patient can be met.
Selection ofaFamily Spokesperson
In most circumstances communication is more effective when a family spokesperson can be designated to respond to messages from the facility IDT and to then
share that information with other family members. The spokesperson can also communicate family concerns back to the attending physician and the IDT. While the
physician and IDT may have a preference as to which family member should be the
spokesperson, the choice should rest with the family. The family’s choice is often
revealing as it typically reects how the family unit has functioned in the past. The
team needs to inquire as to the spokesperson’s preferred method of communication—phone call, text, email, or in-person. Be sure that the spokesperson’s phone
numbers (cell, home, work) and email address are correct and easily retrievable. By
the same token, the spokesperson should be provided with contact information for
the facility attending physician, medical director, director of nursing, administrator,
social worker, and the nurse most familiar with the person/patient whom the spokesperson represents. The administrator should be available to answer questions on
nursing home regulations and policies. As the family spokesperson will not always
be available so a backup family member should be determined.
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D. Brechtelsbauer
Responding toaPhone Call fromanUnhappy Family Member
A useful phrase to initially use when returning phone calls is, “Hello Mrs. Jones.
This is Dr. Smith. I understand you are concerned about your mother.” Mrs. Jones
is not likely to disagree with this greeting. If you don’t know what is going on, call
the facility staff member most likely to provide relevant information before return-
ing the phone call. If the situation is complex or it appears the caller is emotionally
distraught, consider making a face-to-face or telemedicine visit with the resident in
order to collect more information if this can be accomplished without causing too
much of a delay before returning the call. The need for prompt communication
needs to be balanced with the need for preparation and obtaining accurate information on the resident situation.
The next useful comment is to very briey state your understanding of the issue—
“I think at least some of your concerns relate to your mother’s bruises, but please
explain to me what you noticed.” Then do what too many HCPs nd difcult: listen
to the whole story before interrupting or attempting to explain. Families often are as
concerned that they are not being heard or that they are considered by staff as the
problem. Important things to listen for are family perceptions and interpretations
that you did not anticipate, and whether the caller is an eager or reluctant family
spokesperson. Sometimes the spokesperson has been put up to calling by another
family member and the caller’s own feelings and perceptions are not congruent with
feelings and perceptions of the other family member. While working through a family spokesperson is generally recommended, in this case the practitioner may want
to ask the spokesperson if it would be better to speak directly with the person who
has the concern.
After listening, reect back to the family on what you have heard with enough
detail for the family member to be convinced that you have heard and understand
what the family has said. Depending on the issues involved, you may be able to
provide education, reassurance, and an action plan that will satisfy the caller. If the
caller is not satised and the situation is not an emergency, the best response is, “I’m
going to have to look further into your concerns in order to better understand what’s
going on. I will visit your loved one early tomorrow. What is the best way to reach
you tomorrow morning?”
Effective communication by phone includes creating a succinct record of what
was said. This is an extremely important skill. Consider the following example of a
phone call from a family member who’s loved one had been transferred from the
PA/LTC community to the hospital the day before. The phone call is “real” and was
transcribed verbatim (names have been changed) in order to enter it into the medical record.
“This is Donna Smith. I am Richard Martin’s daughter. Richard was taken yesterday from Sunset Manor to the hospital, at rst with thoughts of a stroke or whatever. I guess we just really, really frustrated. Nobody, Dr. Collins or I know he has
students or whatever that come in and are under him [the caller is referring to resident physicians], my mom has not heard anything from him as far as treatment,
what is the plan, what are they going to do? If it was a stroke, what were the blood
Working withFamilies andPerson-Centered Care
317
test results? We need to know. He has been laying up there for a full day with nothing to eat, we don’t know if he can eat. He can’t speak. It is pretty frustrating and I
believe probably somebody needs to get on the ball and nd out what is going on
and let the family know. My number is xxx-xxxx, and my mother’s number is xxxxxxx. Her name is Darla Martin and she is retired. She is on her way up to the hospital right now. Again, we want some answers and we want to know what is going
on. Thank you.”
When this call is returned, an apology needs to be promptly stated. What is informative in this case scenario is the concerned tone of the message when it was
reviewed by listening to the voice mail, in contrast to the hostile tone one quickly
detects upon reading the transcription. A major lesson is not to read too much into a
transcribed message. In situations where there seems to be hostility it’s best to
respond by phone in order to hear the tone of voice and its inection. When face-toface the clinician can better observe and respond to nonverbal cues.
Email and texting have become popular for family communication with clinicians. Both allow for synchronous communication and efcient record keeping.
Like the above example, emails and texts generally cannot accurately convey the
emotional state of the family member sending the email or text, nor can it convey
the compassion of the responding health care professional. When the content of an
email or text conveys urgency, it is generally better to pick up the phone and call
than to respond via return email or text. It is important to carefully proofread your
email response before sending it, and be careful to send it to the right person.
Inadvertently clicking on “reply all” can create problems!
Convening andConducting aFamily Meeting (Refer toTable 1)
Effective phone, email, and text communication and face-to-face meetings with the
family spokesperson can often resolve family concerns. Other situations, either
because of complex medical or ethical issues, or complex family dynamics, require
a more formal process to achieve resolution. Expertise in convening and
Table 1 Family meetings
• Guidelines have been developed by various professional organizations
• Usually occur at the time of a health crisis and in an acute setting
• Often involve the need to deal with an issue that needs to be decided upon on an urgent
basis
• Often involves a conict between the professional care team (physician, nurse, and social
worker are core, others as needed) and the patient/family
• Sometimes involves understanding and managing a conict within the family system
• Ideally involves all family members
• Goals of care discussion focuses on one issue
• Moderated by an IDT member caring for the patient
• Overall goal is to resolve conict and come to an acceptable action plan
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participating in family meetings is an important skill for professionals, particularly
physicians, advance practice nurses, and social workers in the PA/LTC setting [8].
• Preparation for a family meeting needs to be more thorough and thoughtful than
that for a phone call. The convener of the meeting needs to learn as much as possible about the patient/resident and the situation to be addressed at the family
meeting. Ideally all family members will be in attendance. Consulting with the
PA/LTC community’s social worker can provide insight into family structure and
dynamics. Staff participants should be aware of the capabilities and culture of the
community. If the issue is a controversy about a medical issue, it is important for
the practitioner to examine the patient/resident prior to the meeting and review
the medical record. Obtaining insights from other community professionals can
be helpful. If the issue involves a conict that relates to a federal regulation or a
facility policy the administrator should be present.
• Once preparation is complete, set a date, time, and place for the meeting.
Relevant staff and practitioners need to clear their schedules to allow for uninterrupted participation. Avoid having too many staff members attend in order to not
to appear as ganging up on the family. However, all family members should
attend. Out of town family members should be encouraged to participate by conference call or speakerphone. If family members want to attend by a virtual platform, the platform must be HIPAA compliant.
• The convener should begin with introductions and then state the “rules” for the
meeting.
Many physicians, with training and experience, are comfortable in the convener
role, but the role can be assumed by any team member. Most social work training
programs provide training and experience in moderating family meetings.
• The rst rule is every person will be invited to share his/her perception of the
issue at hand.
The person speaking should not be interrupted. If another person interrupts the
moderator can make a note of the concern without comment, and say the concern
will be discussed during the time for that person’s time to speak. Generally speaking, the patient/resident, if present, or the least empowered person should speak
rst. The selection of the least empowered person may be based on being the person
present via speaker phone, or the person with the least education. In an effort to put
family members at ease, assure everyone that all comments are useful to help under-
stand the concerns that precipitated the need for the family meeting. If the moderator is aware of a family member who is either intimidating to other family members,
or has strong feelings about what should be done, call on that person last. The family meeting may be daunting and seem like a time-consuming process, especially
with large families. Often however, once a few family members have spoken, others
will just express agreement or will only have a brief comment.
• After the family has spoken, the moderator should summarize what has been
said and obtain assent that the summary is basically correct. Then each staff
professional is called upon to state, without interruption, her/his perception
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