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In Canada, "bed blockers" – older people stuck in hospital, ready for discharge, lacking the home support or alternate accommodation they require – occupy 5,000 hospital beds and consume $200 million annually. They clog emergency departments and expand wait times for others. Also known as ALC or alternate level of care patients, they languish in hospitals because there is in most cases nowhere else to send them for appropriate care. Do you want this for you or your family?
A few weeks before Christmas my 99-year old aunt fell getting up from her chair and broke a hip. She was taken to a major teaching hospital in Toronto where the hip was successfully mended. That’s the only good part of the story. When she was admitted they told my cousin, her daughter, that my aunt would be out in 21 days. My cousin said to herself: Wow, they must have some pretty sophisticated software – or something - to know exactly how long my mum will be in hospital.
Turns out they weren’t right. My aunt was in for over a month and every day she was in the hospital she lost ground. For 2 weeks after her surgery my aunt had no physiotherapy because there was no-one to provide it. So each day she became more frail, weaker and less able or inclined to get up. As much as my cousin pleaded for help to get her mother up, or at least to change her position in bed so she would not develop bedsores, her pleas invariably were ignored…staff had no time, or it was not the right time….And don’t ever look for help between 3:00 and 4:30; the shift leaving at 3:30 is too busy writing in the charts and the oncoming staff are too busy reading the charts.
But this was only one problem. Another one loomed - where could my aunt go after leaving the hospital? She could not return to her lovely retirement home, as she had lost too much mobility while in hospital. All the rehabilitation beds were full, so she was left in a holding pattern, in limbo; not getting the care she needed in the hospital but unable to access the rehab care she needed because there were no rehab beds.
So every day my cousin spent her days at the hospital (time off work) providing the care and support that hospital staff should have provided. Finally a bed became available at a well-known rehab centre and my aunt was moved there. Even there she has continued to deteriorate. Why? For the first 2 weeks she was there, she received no physio. Why? You guessed it - no staff. When she finally did begin treatment she got and still gets half an hour every 2 days. Unbelievable.
More weeks later she is still there, still waiting for an assessment to determine whether rehab will help. If not she will be sent to a holding ward until a long term care facility bed can be found for her – God knows where. My cousin can afford to hire a PSW (personal support worker) since there she is no longer paying for retirement home care; at least now she can go back to work, although she still spends way too much time at the rehab centre.
Summary: In early December my 99-year old aunt was independent; she could move around, get in and out of a car and enjoyed a good quality of life. Today she is being moved from bed to bed, a frail, bewildered woman with an unknown and frightening future…if indeed it is any future at all.
- Never get sick or need hospital care from approximately December 1-January 15
- Charts rule; patients do not
- Our health care system gives priority to younger patients, not the elderly who cannot speak up for themselves
- Make sure you have discussed health care emergencies with family; no-one should go into our “care” system without an advocate
Annals of Long Term Care: Clinical Care and Aging
ISSN: 1524-7929 VOLUME: 18 PUBLICATION DATE: Apr 01 2010
Issue Number: Volume 18 - Issue 4 - April 2010
By: Fred M. Feinsod, MD, DSc, MPH, CMD, and Cathy Wagner, RN, MSN, MCA, CHPN, CLNC
Annals of Long-Term Care: Clinical Care and Aging is a peer-reviewed medical journal of the American Geriatrics Society, focusing on the clinical and practical issues related to the diagnosis and management of long-term care residents. Although it is U.S., I think we all need to be more aware of elder patients' rights.
- Do right ("good") by the patient.
- The physician's main concern is the welfare of the patient.
- Do what is medically helpful.
Futility of Treatment
- Avoiding harm.
- Implement effective non-hospital treatment when possible (due to complications that can arise during hospitalization of elderly patients).
- Withhold diagnostic work-up or treatment when intervention is unlikely to result in meaningful survival or patient well-being
- Treatment should be consistent with the patient's (clinically realistic) goals.
- Assess each case individually so as to determine whether treatment would be beneficial.
- Avoid interventions that would not benefit the patient and/or prolong suffering.
- Physician's role as an educator helps clarify issues.
Autonomy and Informed Consent
- Complete and absolute confidentiality is the underlying tenet.
- Comply with state laws regarding disclosure to public health authorities and third parties.
- A patient has the inherent right of self-determination.
- A patient has the right to consent and a right to refuse diagnostic work-up or treatment. This includes protection from unwanted touching.
- A patient has the right to be educated on the pros and cons of a medical decision.
- Although patient/proxy may request care in excess of what is considered good medicine; individual autonomy should not violate the principle of beneficence and force physicians to go beyond appropriate medical intervention.
- Autonomy ceases when a patient's request breaks the law or jeopardizes public health or safety (e.g., smoking in one's room in a LTC facility).
- A patient has the right and is encouraged to execute an advance directive. The physician's role as an educator is important in this process. State laws may vary.
- To make autonomous decisions, patients must have capacity pertaining to the complexity of the situation. However, the level of capacity may vary as to the complexity of the decision (refusing to be turned in bed may require less mental capacity than deciding on the pros and cons of a complex operation).
- Surrogate decision-making may be used when a patient's wishes are unknown or unclear or the patient lacks capacity.
- Amount of value placed on the principle of autonomy varies with different cultures. Some cultures may regularly use a surrogate as the decision-maker even if the patient has capacity to decide.
- A therapeutic alliance should exist between physician and patient.
- There should be fidelity, trust, confidentiality, and protection from intended harm.
- Physicians have an important role in educating their patients.
- Disclose relationships that may impact patient care or decisions.
- Physicians have a duty to tell the truth and be honest versus incomplete statements of encouragement. This should be integrated into good "bedside" manner and patient support.
- Technical terminology should not obscure truth and fact.
- Communicate an honest estimate of prognosis.
- Distribute resources and treatment in an equitable manner.
- Be fair and lawful.
- Use objective decision-making processes, not emotional or subjective ones.
- Physicians have a duty to uphold the principle of fidelity—not to abandon the patient after establishing a therapeutic relationship.
- A physician may voluntarily terminate care of a patient after the patient/proxy has been informed and provided with a reasonable amount of time to make other arrangements. The physician may be asked to help with such alternative arrangements.
- When there is conflict between a patient/proxy and physician concerning a course of treatment, guidance may be obtained through an ethics committee, ombudsman, and/or Department of Health.
- Realize that there are limited health care resources.
- Make decisions and allocate limited health care resources in a nondiscriminatory and objective manner.
Alzheimer’s disease… it’s more than you think*
Rising tide of dementia – and boomers
In January 2010, the Alzheimer Society issued a wake-up call to Canadians with its groundbreaking report Rising Tide: The Impact of Dementia on Canadian Society. The report details the soaring prevalence as well as financial and personal costs of Alzheimer's disease and related dementias that could potentially overwhelm Canadian families and our health care system. In 25 years, the number of Canadians affected by dementia will exceed 1 million – and there is no cure in sight.
Because age remains the single largest risk factor, baby boomers, the country’s largest demographic group, will be most impacted. As the first boomers reach 65 in 2011, their risk for developing the disease will double every five years.
Are boomers ready? The Society set out to test their knowledge and understanding of Alzheimer’s disease in July 2010 by conducting an online survey.
TAKE THE SURVEY FIRST BEFORE READING THE RESULTS!
Survey results point to a disturbing lack of awareness about the disease and what boomers can do to lower their risk. Key findings include:
- 23 per cent of boomers polled can’t name any of the early signs of Alzheimer’s disease even though their risk increases considerably with age
- 50 per cent identify memory loss as a warning sign, yet fail to name other critical signs such as changes in personality, behaviour, reasoning and judgment
- Most boomers are familiar with the hallmark of Alzheimer’s disease of not recognizing familiar faces and objects, but less than 50 per cent are familiar with later-stage changes such as hallucinations and total dependency on others for basic care
- Most respondents are unaware of high but manageable Alzheimer health risks such as obesity, diabetes, heart disease and chronic depression
Boomers can take charge
Boomers can be proactive by learning about the disease and how they can protect themselves against it. They can:
- Test their own knowledge by taking the Society’s survey
- Lower their risk through simple lifestyle changes such as eating a heart-healthy diet, staying active and exercising regularly
- Monitor their blood pressure and cholesterol levels and maintain a healthy weight
- See their doctor as soon as they notice sudden changes in their or a family member’s memory or behavior
- Contact their local Alzheimer Society for information
About the survey
A geographically, nationally representative sample of 1,006 online surveys was completed in July 2010. Participants fit the following criteria:
- Between the ages of 45 and 65
- 50/50 split between men and women
- Have never donated to the Alzheimer Society nor had anyone in their immediate family, including themselves, ever used its programs and/or service
- At least 37 per cent have a personal connection to Alzheimer’s disease or a related dementia
- They have Alzheimer’s disease or dementia and/or they have close friends or relatives they know/knew who have/had Alzheimer’s disease or a related dementai
- Respondents were tested in three key areas:
- Early signs of Alzheimer’s disease (unaided and aided awareness)
- Later-stage symptoms of Alzheimer’s disease (aided)
- Key risk factors for Alzheimer’s disease (aided)
* Reproduced with the permission of the Alzheimer Society of Canada
Bill 52: Help Establish an Alzheimer Advisory Council in Ontario
On a bitter, cold night in early January, Tak Fong Lam Chiu froze to death steps from safety after wandering from her home. The Alzheimer Society of Ontario has asked the Premier to respond to this tragedy by fast-tracking Bill 52 and establishing an Alzheimer Advisory Council. The Alzheimer Society feels that this act would honour the life of Mrs. Lam Chui and be a positive step in preventing further deaths of this kind. A copy of the letter is posted on their website.
Please join the Alzheimer Society in seeking action on Bill 52. Write your MPP and the Premier so that Bill 52 will receive immediate attention. See the web site for more information.
Top 5 family caregiving myths and misconceptions
As found by a U.S. landmark study, Our Family, Our Future: The Heart of Long Term Care Planning, sponsored by Genworth Financial (Genworth) and released by Age Wave and Harris Interactive.
- Financial Contributions:
While only 40 percent of caregivers expect they will contribute financially to the care of a family member, the reality is that 83 percent actually do.
- Income Hit:
In actuality, 63 percent of caregivers experience a reduction in income. This compares to 38 percent of caregivers that expect to experience such a reduction.
- Reduction in Savings:
37 percent of caregivers expect their savings to decline as a result of their caregiving responsibilities. The study found that, in fact, 61 percent of caregivers have used some of their savings to care for a loved one.
- Retirement Funds Tapped:
Of caregivers surveyed, 57 percent actually tapped their retirement funds to care for a loved one, compared to 34 percent that expected to do so.
- Career Impact:
Nearly half (48 percent) of caregivers lost a job, changed shifts or missed out on career opportunities as a result of their caregiving responsibilities, compared to 29 percent that expected such impact.
Here's the way it should be: Let's put the seniors in jail and the criminals in nursing homes. This would correct two things in one step:
- Seniors would have access to showers, hobbies and walks.
- They would receive unlimited free prescriptions, dental and medical treatment, wheel chairs, etc.
- They would receive money instead of having to pay it out.
- They would have constant video mongering, so they would be helped instantly if they fell or needed assistance
- Bedding would be washed twice a week and all clothing would be ironed and returned to them.
- A guard would check on them every 20 minutes.
- All meals and snacks would be brought to them.
- They would have family visits in a suite built for that purpose.
- They would have access to a library, weight/fitness room, spiritual counseling, a pool and education...and free admission to in-house concerts
by nationally recognized entertainment artists.
- Simple clothing – i.e. shoes, slippers, PJ's - and legal aid would be free, upon request.
- There would be private, secure rooms provided for all with an outdoor exercise yard complete with gardens.
- Each senior would have a P.C., T.V., phone and radio in their room at no cost.
- They would receive daily phone calls
- There would be a board of directors to hear any complaints and the ACLU would fight for their rights and protection.
- The guards would have a code of conduct to be strictly adhered to, with attorneys available, at no charge to protect the seniors and their families from abuse or neglect.
As for the criminals:
- They would receive cold food.
- They would be left alone and unsupervised.
- They would receive showers once a week.
- They would live in tiny rooms, for which they would have to pay $5,000 per month.
- They would have no hope of ever getting out.
"Sounds like justice to me!"
The Mississauga based organization decided to make it easier for people to find what they need. The purpose of widowed.ca is to provide access to the information and services that widows, widowers and their families need in one convenient place, facilitating the right solutions for each individual.
A Guide for Caregivers: Moving people Safely www.uhn.ca/patients_&_visitors/health_info/videos/videos.asp
Preserving Your Memory magazine
Writing Down Our Years
50/50: Solving Family Conflict
50-50 Rule® programs and practical support services are offered to develop open discussions between adult siblings in an effort to help them improve communication skills, develop teamwork, make decisions together and divide the workload in caring for aging parents. Check out these tips on how to share the care.
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