COMPULSIVE HOARDING: THE ETHICAL DIMENSIONS

An ethics resource for the community health sector

This guidebook will provide a brief overview of compulsive hoarding, a review of relevant legislation, and consideration of the ethical tensions. A case study will walk through a reflective decision-making process in action. A resource list will be provided, to offer more in-depth information about practical ways to help an individual who hoards, and links for legal resources.

This guidebook has emerged out of observations that the literature and practice base on the subject of compulsive hoarding remains in a nascent stage, where emphasis is placed on practical skills and strategies to assist the individual. Recognition and articulation of the ethical tensions of doing so is not as readily discussed. This guidebook hopes to commence this ethics dialogue, as well as to normalize the moral tensions many wishing to help are likely to experience.

What is it?

Compulsive hoarding is characterized by:

  1. The inability to discard items.
  2. A living space precluded from the use for which it is intended.
  3. Significant impairment in functioning because of the clutter.

People may compulsively acquire items that have little recognizable use to others. Frost et al (2010)

How common is it?

Rates are not known for sure, but estimates are that 2.3-6% of the population may have it.

It can start at any age (signs as early as 13), but the clutter may more often be controlled by others. As such, it may not be apparent for many years, until those supports are no longer in place. Samuels (2008)

What items are hoarded?

There is no list required. Items can be anything, but they are likely to share a common feature of being underutilized. They may include newspapers, clothing, food, toys, refuse. Because it also involves an inability to discard items, it is not uncommon to see vast amounts of garbage and waste. In extreme cases, it may include animals. Tolin et al (2007)

What are the risks involved?

  • Safety: falls (trip hazards), infestation (too cluttered to clean + accumulation of garbage), fire (combustibles, blocked exits)
  • Financial: acquisition may take up most of the day, affecting ability to work.
  • Social: Isolation due to focus on hoarding activities, and probable desire to hide condition of home from others.

What is compulsive hoarding? Definitions and Key Terms

How is it different from “Collecting”?

Collectors are more likely to display their items in an organized fashion. There may also be a willingness to share/show the collection to others. The level of impairment into areas of daily life is less than hoarding. People who hoard tend to have all their items on display as well, but this may instead be due to organization, overwhelm, and wishing to have items available. Richter (2012)

What is Diogenes Syndrome?

Diogenes occurs in older adults, and is characterized by extreme self neglect. It may not have the same level of acquisition, or emotional attachment to items as hoarding, but generally shares the level of disorganization and accumulation. It is often not discovered until the crisis stage. (Richter 2012)

What are current ‘best practices’?

The longer one can engage, the better, so to establish a trusting relationship. There are many strategies to employ, to ensure the client feels supported and empowered, as they begin sorting. See the Reference section on page 8 for examples. From a psychiatric standpoint, there is some efficacy for Cognitive Behavioural Therapy + SSRI medication. There are likely to be challenges in accessing such treatment, as few specialize in hoarding.

Is it a mental illness?

It is not yet Richter (2012) recognized as a distinct illness, but it has been classified as a symptom of Obsessive Compulsive Disorder. The psychiatric community is close to recognizing it as a distinct illness, which may then open up a better understanding of its causes, and ways to treat it.

What causes it?

Research is still emerging, but there is a general acceptance that previous trauma, can make someone more vulnerable. Research is still required to understand brain processes. It is not caused by laziness, nor is it likely to be solved by a ‘clean out’. There are deep, emotional and psychological reasons behind the behaviour.

Why do people hoard?

They have distorted beliefs about the items, so they may attach inflated meaning to the items (seen as extension of self, offers comfort and security), and exaggerate the utility (future use, personify objects as having feelings) + they are likely to experience difficulty organizing, making decisions. Tolin et al 2007

What’s the law got to do with it?

Knowing the relevant laws is important when working with compulsive hoarding because it may empower you to act, or may clarify a decision you were wavering on. In this section, an attempt is made to provide an overview of the most salient legislations. This list is not exhaustive, and does not constitute legal, nor ethical advice. For further clarity, consulting a community legal clinic or regulatory college is advisable.

I want to inform the Landlord; the client says no.

PHIPA (Personal Health Information Protection Act) explains consent law, as it pertains to disclosing confidential health information. Consent is required at all times, with the exception of disclosures related to risk (s.40). This legislation, and case-based law (Supreme Court, Smith v Jones, 1999) explains that if there is a perception of imminent harm, confidentiality may be breached. This must be accompanied by knowledge of:

  • a clearly identifiable victim (or group)
  • the risk includes serious bodily or psychological harm,
  • an element of imminence and urgency.

What if I don’t think the client understands?

If you feel the client is not capable – that they do not understand the information, nor appreciate how it applies to them – you must follow process, as explained in the Health Care Consent Act (HCCA), the Substitute Decisions Act, and PHIPA, then obtain consent from a substitute decision-maker before initiating help.

I am worried about my client’s health, but they don’t see a problem…

If you think your client and their living situation is no longer tenable, to the point hospitalization may be necessary, the Mental Health Act of Ontario, describes the conditions on which a person can be brought in for assessment involuntarily. These include imminent harm to self or others, and a belief that the cause may be psychiatric in nature. You may call 911, and request a crisis team (if available), or apply for a Form 2 from a Justice of the Peace should police not perceive the same risks to self that you do.

What are the rights of tenants – and Landlords?

A landlord can enter a unit, with notice, to carry out an inspection (s. 27), as described in the Residential Tenancies Act. If it is an emergency, they may enter without notice (s.26).

Tenants are obligated under Municipal Standards to keep their dwellings in sanitary and working order, and to keep exits clear and outdoor spaces free from clutter (Public Health by-laws). Landlords, however, are obligated under the Ontario Human Rights Code’s, Duty to Accommodate legislation, which means supports must be given to assist the individual, if necessary. This could manifest in extra time from the Landlord Tenant Board in the face of an eviction notice, for instance, to grant time to rectify the situation. The landlord is protected once the accommodation reaches a point of ‘undue hardship’. Neighbouring tenants are protected in their rights to ‘reasonable enjoyment of the unit’.

What is the Fire Code?

The Fire Code reviews fire hazards, with special emphasis on combustibles. The fire department cannot force entry for an inspection; they would need consent, or be granted entry by a landlord. If they are granted entry, they can help the client identify risks, or remove the risky items if they discern the risk high enough. The Ontario Fire Marshal has encouraged the public to notify Fire Departments if they suspect hoarding, but health professionals must remember they are accountable to consent laws, which the public or landlords are not.

In an instance of severe hoarding, a neighbour may be the identifiable person, but the harm criteria is less straightforward. Is the risk of infestation, or the risk of fire (due to combustibles) imminent? This is something that must be carefully weighed in the situation. If the risk seems less imminent (there is no fire, bugs are not fleeing) one must discuss the potential impacts of the disclosure. What will it achieve, both short-term and long-term? The law might offer legal direction, but is this enough for you? Think about possible impacts for your client, and your relationship with them. Hoarding benefits from a long-term, trusting relationship.

Ethics in Action: Bessie

Bessie is a woman in her mid-60s. She receives mental health support through an outreach service that conducts home visits. She has been a client of the program for 3 months, and was referred following repeated admissions to the local mental health unit of an acute care hospital. She resides alone in a bachelor apartment in the downtown area of an urban centre. She has no close family members and her support network is very limited.

She has a mental health diagnosis of schizophrenia. The team attempts visits twice per week to offer assessment, treatment and support. Team members were informed she has “clutter” issues, but have been unable to see the extent, as she denies the team entry into her home.

Bessie has occasionally presented at the team’s office, often to seek their support in attaining obstetrics support, as she believes she is pregnant. During these contacts, team members note that Bessie appears disheveled, malodourous, with insects crawling on her worn clothing. She has several bruises on her face. She also carries around a shopping buggy, within in which she carries items she has recently acquired.

Team members have concerns about Bessie’s physical health status, and her mental well-being. Concerns are expressed around the state of her apartment, given her physical appearance. They work on building Bessie’s trust, by supporting with her obstetrics pursuits, and are eventually granted access inside her home.

Upon entering two team members note the overwhelming odour, and remark on the piles upon piles of newspapers and collected household items, most of which appear to be dirty and/or broken. She explains she needs these ‘for my baby”. Team members then notice an eviction notice sitting on the floor in the doorway. When they ask Bessie about it, she informs them this is not any of their business – “the landlord is crazy, he doesn’t understand.” Team members express their concerns to Bessie, but she disregards their concern, and explains she needs their assistance to repair ‘something for the baby’.

While she is looking, the team members note appliances that appear to be in disrepair, rotted food items, cockroaches and bed bugs, and numerous trip hazards, given the extent of the clutter.

They return to update the remaining team members, all of whom express concern and a need for action.

Is this an acute situation?

How should team members proceed, given Bessie’s reluctance to engage?

Moral tensions articulated…

“I think before we jump to the neighbour’s wellbeing, we have to think about Bessie. She’s our client – not them. I didn’t see a bed in there – I don’t know where she sleeps, and what kind of food is she eating!? None of the appliances are in working state, the fridge is full of mould. And there were so many hazards to her – breathing in that air, she’s probably fallen – at the bruises – and my goodness, if ever there was a fire and she was in there….would she be able to get out?”

“Well, I don’t even think we need to think on those levels. Is this not an emergency? I mean, if she falls asleep with a cigarette in her hand, that whole unit will go up – not to mention her neighbours. I think we have a duty to warn the fire department right now. And Public Health as well, given the garbage and infestation; that cannot be hygienic.”

“I can appreciate the concerns we have for Bessie, but what can we do? I don’t feel comfortable getting in there to help her clean. I mean, what about my own breathing? My own risk of infestation? We don’t have the equipment or training to be doing that…”

“I feel so obliged to do something. Her apartment was in a terrible state. Bugs everywhere, garbage, endless piles of stuff. I can only imagine what is growing and living in there. It’s very sad, but I can understand why the landlord would issue the Eviction Notice – could you imagine being her neighbour? What about the risks to them because of her actions? That’s not fair that they be at risk to infestation. And what if she had a fire? Then what? Remember 200 Wellesley? We’d be liable if we knew and didn’t report it.”

“I see what you’re saying, but I don’t think we can breach her confidentiality just like that? It’s not an ideal situation, but who knows how long she’s been like this? And there are lots of risks, yes, but are they imminent? I don’t feel right calling behind her back like that. Unless she is standing over her papers about to drop a match, the risk isn’t imminent. We can’t be held liable for actions that we aren’t witness to. ”

“Yeah I agree. I think we just call. I know she brushed this off, but what harm will come? I’ll sleep better knowing we raised this. I think we should also let her landlord know that we are involved, and that we are trying to get help for her. Maybe that will save her housing?”

“This was the first time inside her apartment. What will happen to our rapport if we report her? Will she ever let us in again? Will she trust us again? I think we have to look at this really closely. Maybe we should get some outside advice?”

*200 Wellesley refers to a recent high-rise fire that occurred, wherein a cigarette tossed off a balcony landed on the cluttered balcony of a now-identified individual who hoards. 17 people were injured and 1200 displaced. The Fire Marshal has called on the public to inform the Fire Department to inform them of suspected hoarders.

Ethical Tensions

Community wellbeing:

Taking a utilitarian approach, one may argue that in breaching Bessie’s confidentiality, so to inform her neighbours and the landlord, this would offer the greatest benefit to the greatest number of people. It could ensure the neighbours take steps to ensure their own safety, it could enhance Bessie’s safety with support from a fire inspector, and it could prompt pest control from the landlord, and permits advocacy by the team. It may impair the team’s rapport and Bessie’s future trust in them, but this would be weighed against the purported benefits.

  • Benefit according to whose perspective?
  • What if these parties are already aware - confidentiality was breached w/o gain?
  • How accurately can the consequences be predicted?

Quality of Care:

By expressing concern for Bessie’s safety, it is evident that there is concern for her wellbeing. Team members are in a position of providing care to Bessie, so they are right to have concerns for her physical safety, and emotional health. In order to provide the care that is required to her, it may mean being present is uncomfortable environments. How much must they balance provision of care to Bessie with concern for their own wellbeing?

  • What is an acceptable level of risk? What is an imminent harm?
  • What can staff do to protect themselves from risk, so to still offer optimal care?
  • Who in your workplace can offer guidance on this point?

Confidentiality:

The team is clearly wrestling with whether or not to breach their confidentiality with Bessie. It is evident that she has not given consent to have the fire department, neighbours, public health, or her landlord contacted. Health care professionals are bound by the need to obtain consent before sharing personal health information. There are some exceptions to this rule, for instance, if it is an emergency.

  • Does this constitute an emergency?

Autonomy & capacity:

A fundamental ethical principle is autonomy: the right to make decisions for ourselves, and to live according to these decisions. Of note is that the decisions must be informed and capable. The team has not asked this question of Bessie. If she is making capable choices in her wishes to be left alone, the team must respect her autonomy, unless others at immediate risk. To do otherwise may violate her rights and her dignity. If her wishes are not capable, the team must follow a process of first informing her, and then locating a substitute decision-maker. This individual acts as Bessie’s representative, and their capable decisions are to be respected. Failing to do so could result in Bessie, as a vulnerable person, being left at an increased risk, for which she may not be aware, and not able to manage.

  • Capacity is assessed by the individual proposing the intervention.
  • For any questions, the Public Guardian and Trustee is a valuable resource and calls can be placed for assistance/direction without revealing confidential information.

Ethical Decision-Making Worksheet

I. Identify the facts

D. Determine the ethical principles in conflict

E. Explore the options

A. Act on your decision and evaluate

Step 1: Identify Facts

Medical: 66 y/o female, schizophrenia, minimally engaged w team, hoarding, bruising, malnourished?, smoker,

Client Preferences: not consenting to help w/hoarding, capable?, likes apartment, private

Quality of Life: questionable, has apartment/independence, but poor hygiene, self-care, limited support network, physical health status?, infestation

Contextual Features: apt +++ clutter, filthy, infestation, appliances not working, sanitary? Numerous hazards (fall risks, infestation, fire risk), further limits social envt. Eviction notice received – does she understand it? No family/supports.

Step 2: Determine the Ethical Principles in Conflict

Confidentiality: Team wants to help, but feel resources are limited w/o outside help from landlord, public health or fire dept to enforce codes. She is not consenting. Do the risks – and benefits of disclosing justify breaching?

Quality Care: team wants to offer quality care, but Bessie is not permitting team to assist her as they feel is best for her. Some staff also express discomfort with entering her unit.

Autonomy vs. Community well-being: Bessie’s rights to autonomy in her home vs. rights of community

Autonomy and Capacity: If capable, team must follow her wishes to live within risk, so to honour her dignity. If she’s not capable, and we fail to assist her, are we being negligent? In that case, we could be placing her at increased harm.

Step 3: Explore Options

  • Breach confidentiality and speak to landlord. Hope that it will prompt assistance and supports, and may offer opportunity to save Bessie’s housing. Explain the process and rationale to Bessie. Also explore her capacity. Pro: might save her housing, get help. Con: could jeopardize already fragile rapport, cap ax may need more time.
  • Assess closely for risks. If not of imminent nature, increase visits (give visible presence in building, without explicitly disclosing), while offering emotional support re: pregnancy, and frame concerns in apartment in a way that may relate to her. Explain eviction process to her, and wishes to help. Do not breach confidentiality unless emergency arises. Assess capacity to disclose. Consult community legal clinic for any suggestions. Pro: may maintain rapport, makes risk explicit in supportive way, Cons: may not address eviction in timely fashion.
  • Stay as-is – fairly hands-off approach. Pro: may appease Bessie, Con: does not address team’s concerns for her well-being.
  • Call a cleaning company to enact a clean-out of Bessie’s apartment. Pro: rids clutter, addresses sanitation. Con: does not respect Bessie’s wishes or dignity; could be emotionally devastating, and compromise her mental health to a state of crisis.

Step 4: Act on Decision and Evaluate

Assess for risks, increase visits, consult community legal clinic, and assess capacity for disclosure of health information. The team will visit her daily (as able) to monitor for risks, while attempting to strengthen rapport with her. They can work on securing legal assistance, should the landlord seek to evict Bessie – she may be open to receiving support at that time, and then they will be ready. If the team, at any time, feels a risk is imminent, they can at that point enact emergency services, and inform the landlord. The team will continue to evaluate their decisions and reactions.

Resources & Recommendations

Information about Hoarding

Reputable sources: David Tolin, Randy Frost, Gail Sketetee

VHA Home Health Care: www.vha.ca , and/or purchase The Community Clutter & Hoarding Management Toolkit for practical tips and tools to assist someone in need. (416) 489-2500.

City of Ottawa, Hoarding Coalition Report, No Room to Sparewww.hoarding.ca/pdf/SCPI_FINAL_Report4.pdf

Legal Advice

Association of Community Legal Clinics (ACLCO): www.aclco.org/ for a local listing. They can get involved preventatively, and can explain legal considerations and rights.

Ontario Human Rights Commission: www.ohrc.on.ca, 1-866-625-5179 (Legal Support Division)

Landlord and Tenant Board (Ontario): 1-888-33-3234, www.ltb.gov.on.ca

Public Guardian and Trustee: 1-800-387-2127

Legislation

PHIPA, http://www.e-laws.gov.on.ca/html/statutes/english/elaws_ statutes_04p03_e.htm

MHA, http://www.e-laws.gov.on.ca/html/statutes/english/elaws_ statutes_90m07_e.htm

Municipal Standards (Toronto):, http://www.toronto.ca/legdocs/ municode/1184_629.pdf

Residential Tenancies Act:, http://www.e-laws.gov.on.ca/html/statutes/ english/elaws_statutes_06r17_e.htm

HCCA, http://www.e-laws.gov.on.ca/html/statutes/english/elaws_ statutes_96h02_e.htm

SDM, http://www.e-laws.gov.on.ca/html/statutes/english/elaws_ statutes_92s30_e.htm

Ethics

www.communityethicsnetwork.ca/wordpress/ - you may download the Ethical Decisionmaking Guide (IDEA)

References:

Samuels et al (2008) Prevalence and correlation of hoarding behaviour in a community-based sample. Behaviour Research and Therapy, 45, 836- 844. Frost R. (2010) Hoarding. Cognitive and Behavioural Practice, 17(4) 401-403 begin_of_the_skype_highlighting 17(4) 401-403end_of_the_skype_highlighting. Frost et al (2010) Hoarding: A community health problem. Health and Social Care in the Community 8(4) 229-234. Tolin et al (2007) Buried in Treasures. New York: Oxford University Press. Richter P. (2012) Hoarding: What is it? Toronto Community Hoarding Forum.

Guidebook compiled by Andrea Perry, OT Reg (Ont), MHSc Candidate in Bioethics. University of Toronto, 2012 andrea_perry@camh.net

This information prepared in conjunction with the Government of Canada, Networks of Centre of Excellence, and NICE.