Abstract
According to the Canadian National Initiative for the Care of the Elderly (NICE), compulsive hoarding is characterized by the inability to discard items, a living space that is not usable for the intended purpose and significant impairment in functioning because of the clutter. 1 The health and safety of the subject can be seriously threatened. Characteristics can include the presence of fire and health hazards, rodent and bug infestations, mold formation, resulting isolation, inability to find important documents or possessions, inability to finish tasks on time, and development of interpersonal conflicts. 2 According to University of California, San Diego (UCSD) Department of Psychiatry, hoarding is a subset of obsessive–compulsive disorder (OCD) with 25%–40% of patients exhibiting hoarding symptoms. The Diagnostic and Statistical Manual of Mental Disorders 3 (5th ed.; DSM-5; American Psychiatric Association, 2013), a widely accepted nomenclature for the classification of mental disorders, assigns hoarding a distinct diagnostic code, 300.3(F42). Although prevalence is unknown, an estimated 1.2 million people suffer from compulsive hoarding in the United States. 2 Clinically significant hoarding rates in the United States and Europe are noted in the 2%–6% range. 4 An ethical concern encountered in the practice setting involves allowing the continuation of self-care home dialysis therapy in the presence of hoarding.
Background
Situational description
Donna, 76 years old, widowed 1 year ago, lives with her 73-year-old sister Mary and 42-year-old son Dan. Donna has been on home peritoneal dialysis for 3 years. After the death of her husband, 1 year prior, a decline in her nutritional status was evident, visually and by a drop in serum albumin to 2.8. Donna reports to the staff that tension is building between the sisters and her son. Previously, prompt to appointments, with treatment documentation in hand, Donna is now forgetful, states she cannot find things, and often reports arguing with her son and sister. Donna is dependent on her sister who assists in therapy set up and transportation. Dan offers little physical or emotional support to his mother and aunt while expressing personal frustration and anger to the clinic staff.
The social worker at the clinic receives a call from the county health department reporting Donna’s home for hoarding. The county cites the need for changes within 2 weeks; otherwise, with threats of legal action with possible citing of the home as uninhabitable may occur. The social worker, nurse, and physician along with the family meet to discuss the communication in light of therapy. After the nurse and social worker complete a home visit, deeming the home unsuitable for home therapy in its present state, immediate action is necessary. Excessive accumulation of debris, impassable walkways within the residence, unsanitary kitchen, and bathroom conditions with obvious mold contribute to an environment unsuitable for the aseptic peritoneal dialysis procedure needed to perform on a daily basis (see Figure 1). The family agrees to get professional assistance by an independent cleaning service specializing in de-cluttering. The process of cleaning begins but soon there are mounting allegations by the family of missing valuables, accusing the workers of theft. Unwarranted suspicions prevented further progress. Soon thereafter, Donna falls and is hospitalized with a broken pelvis.
Treatment area with peritoneal dialysis cycler on table to the left.
Analysis
An ethical issue is present. After initiation of home therapy, does the interdisciplinary team (IDT) have an obligation or duty to insist the home environment meet clinic policy to perform a clean, safe treatment? Can access to therapy supplies be stopped pending verification of an appropriate environment? What ethical ongoing responsibility does the team have to ensure the home environment is suitable for therapy? To what extent does the team address the hoarding issue in light of care coordination for home dialysis therapy? How much can be expected of involved family members?
Those directly affected by this situation include the patient, her family, and the home therapy team, which includes the physician, social worker, nurses, and dietitian. Stakeholders involved indirectly comprise the home therapy company, the dialysis supplies company, Donna’s Medicare insurance provider, the county health department, and the neighborhood. Maintaining a sense of autonomy for Donna, while respecting those providing services as well as the community, is important in the resolution of this situation.
Donna, along with her family, has the greatest insight into the development of this hoarding problem. Recognizing its presence, the willingness to take action, and working through the issues bringing them to this state, including physical and psychological concerns completes the assessment picture. To what extent is the home therapies team responsible to treat the hoarding issue in order to provide a clean, safe environment for dialysis continuation? Addressing the mission of the company, which includes “making life better for those living with kidney disease,” what parameter is the team ethically to follow?
An ethical dilemma occurs when a conflict between two or more competing values or principles exists. 5 In this situation, identifying a variety of perspectives from stakeholders having different ethical priorities can complicate the situation. Public safety is a priority to the county office due to rodent and fire hazard concerns, adult protective services look at the safety of the subject over the neighborhood, healthcare personnel consider the ethical dilemma of performing treatment in an environment conducive to infection, or personal injury, and the ethical right to participate in hoarding activity as a choice.
A number of questions arise from analyzing this ethical dilemma. Who is the major concern? As a home training healthcare facility, is Donna our primary concern? Are we obligated to expand our influence to other family members? To what extent does the hoarding interfere with her treatment? Do we wait for an infection to occur or injury to happen? Why do we as the providers care? Are we concerned about infection rates leading to decreased reimbursement? At what point do we refuse to treat? What alternatives are there?
Idealistically, a true altruism among the IDT will be present with moral accountability to caring for Donna. A deontological duty to provide care that sustains life in a manner the IDT determines safe and adequate prevails. While doing so, the IDT needs to recognize the principles of patient autonomy. Our societal mores tell us the situation is unhealthy as healthcare providers. The overriding moral compass ethical principles of beneficence and non-maleficence are driving forces protecting the patient. 6
Recommendations
What is the right thing to do and why? The team convened immediately when notified of impending eviction of the patient. Direct communication, with the patient, her sister, and son, demonstrated urgency, importance, and health concerns. Addressing the scope of family dynamics, dysfunctional living situation, and financial resources while providing resources for cleaning services, the immediacy to maintain housing and provide safe therapy are paramount. Attitudes of compassion for all involved were clearly communicated. Avoiding triggers of blame to whom or what was the cause of this situation was clear. The right thing to do involved being straightforward, truthful, factual, and firm on treatment performance conditions parameters. Care not to inflame emotions leading to complete chaos was skillfully monitored. The family wanted to take charge of cleanup without outside help. They were fully aware of the legal ramifications not related to medical care of Donna.
What happened? Initially, services of a professional clutter cleaner were employed. Although making some progress, the family became disillusioned and soon terminated services. Donna suffered a fall soon after, sending her to the hospital and rehabilitation services. Two months later, pending release from the rehabilitation center another home visit occurred. The home condition had worsened with no progress. Complicating discharge the home therapy clinic, informed the family Donna would not be allowed to continue home therapy if inspection showed safety concerns. The rehabilitation center met the desired outcomes for her physical recovery and insurance justification ended. The patients’ niece appeared, arranged for de-cluttering, new carpeting, and acceptable access to the patient living quarters, transforming previously uninhabitable living quarters through her take-charge actions (see Figure 2). Animosity among family members ran high. The county never issued any further action.
After cleanup.
The amount of influence the IDT has upon family functioning is limited. Influence of the doctor has the greatest impact due to the generational bias of the elderly patient. The approach was suitable in this crisis although it has led to an awareness of a complete assessment prior to initiation of home therapy. Treating the long-standing hoarding in the family is not part of the purview of the home therapies clinic. Offering resources, compassion, providing a sense of trust that therapy will continue, if meeting basic requirements is essential to fostering Donna’s desire for autonomy and dialysis self-care in the home. There is clearly a need for follow-up plans and expectations to assure avoidance of regression to an unsuitable living environment.
Conclusion
The approach taken was one of information, support, and development of trust between the IDT and the family. Focus remained on Donna’s health and safety, avoiding broaching the emotional, psychological significances of the hoarding situation. Boundary crossing within family dynamics was sensitive. Avoiding judgment statements during sensitive communication was a constant effort. The framework of beneficence was paramount when promoting continuation of care. Eventually, involvement of another family member outside the home became necessary in order to elicit the necessary response and action. Cleaning the environment on the verge of being condemned, to allow the patient to perform safe home peritoneal dialysis was the priority. The family acquiesced and the massive undertaking was achieved. With no judgments made, the reality of the situation in light of safety required full attention of the IDT to allow continuation of home self-care therapy.
The goal of home therapy is to promote self-efficacy, respect autonomy, offer education, and guidance in professional therapy matters. The course of action taken in this situation allowed the patient to return to her home, as she desired. Ethical challenges addressing the overriding psychological basis for hoarding will continue. The IDT has an ongoing ethical responsibility to advocate for Donna while not crossing boundaries into other medical issues that may intensify. 7 Communicating clearly and implementing the policy to inspect the home condition prior to initiation of therapy to all prospective patients is essential to providing a suitable, safe environment for best outcomes.
The healthcare team has limitations in addressing family dynamics in the home therapy dialysis setting. The needs and best interests of the patient are the foremost concern and must be carefully addressed in the environment.