Sunday, March 29, 2009
Improved Home Care services may be the key, but abuses of such workers create a risk for the PSWs and Nannies, as much as Elder Abuse and neglect is a risk for seniors. Those without the money to pay for services (housekeeping, lawn cutting, snow removal, transportation to medical appointments) are at risk. It is those in poverty at the most risk of developing serious comorbidities.
Those who smoke, who have diabetes, or have addictions and mental health issues are in lower socioeconomic groups and are more likely to be hospitalized. Chronic disease impacts especially in later years.
For those without the money for preventative medical and dental care their problems are compounded.
Saturday, March 28, 2009
In actual fact, we depend a great deal on volunteers in health care and education: senior's support groups, Canadian Cancer Society, Alzheimer Society, hospice groups, Meals on Wheels, local (fundraising) Festivals,
Many, many transfer payment agencies (TPAs, such as: FYCSM, Victim Services, The Friends, LHIN) depend upon volunteers to support some of their work, and to sit on their board of directors.
TPAs funnel our tax dollars and account for funds through Mental Health, Health Care, for example, as they maintain an advisory and governing body to ensure that money is wisely spent. In my opinion, if they are paid, they are compromising, and may have conflict of interest. It is generally accepted that most board members are paid mileage, but not for their time.
Over the years: 2004 - 2008, the Public Health Agency of Canada managed transfer payment programs in excess of $5 million.
Health Care Costs
I read a blog post the other day, "this is why private health care costs more". I'm not sure I agree if this is why the costs are high. Greed and unregulated for-profit institutions, perhaps.
It reads in part,
"The facility is owned by a company called AgeCare and it receives money from Alberta taxpayers to provide long term care facilities in the province.
While AgeCare claims giving raises to employees earning $12.40 an hour would break it, it paid its co-owner, Dr. Kabir Jivraj, $910,000 in salary and bonus money last year. The board of directors pocketed $16 million."
I am very surprised. There must be ethical concerns here. I would be afraid for my family members, and myself, in these institutions.
Saturday, March 21, 2009
A recent research study has raised some fuss. The National Post & Calgary Herald, cite a study that claims that "physical restraints were used in Canadian homes on an average of 31.4% of residents in the previous seven days, compared to 6% in Switzerland, 9% in the United States, 20% in Hong Kong and 28% in Finland." A European study cites rates of 0 - 22%.
The Canadian data is from only 19 long-term-care homes and 41 continuing complex-care hospitals, most in Ontario, between 2003 and 2005. I would suggest that with such a wide range of type of institutions: Retirement Homes, Long-Term Care homes (LTC - formerly called nursing homes), as well as chronic care placements, we are unable to make a definitive categorical statement without much more information. In addition, we do not know how these homes and hospitals were selected compared with the other nations in the study.
Restraints can include bed rails, arm restraints, safety belts in wheel chairs, or pharmacological methods.
The National Post says, "Prof. Hirdes said he believes the results are representative of the whole country". I hope this is untrue. I know that in the Long-Term Care home where my father was housed, and the one in which my dear friend lives, I have not seen any situations like this. Several residents were unable to walk. Others were practically comatose. They need to feel safe and have protection. In complex-care or chronic care institutions residents are at risk for harming themselves and/or harming others. In these places we have a continuum of care that is highly individual.
I feel that in all the time I have spent in LTC in Muskoka, I can see that restraints are an important tool for caregivers to use. It is a decision that must be made on an individual basis. I fail to understand why we can conclude that restraints are overused, when we do not have information on the number, range, and types of (dis)abilities of care recipients.
In my father's case, he had delirium and dementia. He was unable to remember or understand how to use the call button in his LTC room. He continually fell out of bed, on the floor. We lowered his bed, but it did not help. He continually tried to get out of his wheelchair, and due to balance issues could not stay upright in the chair. This put him at great risk for falling and hurting himself.
In Ontario we have, for example, more than 600 LTC 'homes', and they are primarily (approximately 500) for-profit. These places are regulated by the Ontario LTC Act, and are monitored with results posted on-line.
An Elder Care blogger, in a blog, cites similar concerns over Elder Abuse and restraints in the UK. CSCI Professional (UK) has a report out, too. People are concerned around the world.
Somehow, some are equating restraints with elder abuse. I think this is wrong.
"Elder Abuse is a single or repeated act, or lack of appropriate action, occurring in any relationship where there is an expectation of trust that causes harm or distress to an older person”. (WHO)
There is a huge difference. The purpose is to keep a resident from falling, harming him/herself or other residents, or staff members. Pharmacological restraints, to prevent agitation can exacerbate a situation as the resident may have side effects. These cases must be monitored.
There is a push on in the US to reduce cases of unnecessary restraints. It is a good principal if it can be put into practice, especially in a country with no universal medicare. In this situation, we must ask further questions and determine the comorbidities that call for such restraints.
The answers lie is sufficient staffing and supervision, inspections, rigorous training for staff and family members, and respecting the independence, dignity, and self-determination of those with or without dementia, balancing the needs of those around the resident.
1. Brungardt GS. Patient restraints: new guidelines for a less restrictive approach. Geriatrics. 1994;49:43-50.
2. Capezuti E, Strumpf NE, Evans LK, Grisso JA, Maislin G. The relationship between physical restraint removal and falls and injuries among nursing home residents. J Gerontol Med Sci. 1998;53A:M47-M52.
3. Flaherty JH, Tariq SH, Raghavan S, et al. A model for managing delirious older inpatients. J Am Geriatr Soc. 2003;51:1031-1035.
4. Macpherson DS, Lofgren RP, Granieri R, Myllenbeck S. Deciding to Restrain Medical Patients. J Am Geriatr Soc. 1990;38:516-520.
5. Mion LC, Fogel J, Sandu S, et al. Outcomes following physical restraint reduction programs in two acute care hospitals. Jt Comm J Qual Improv. 2001;27:605-618.
6. Neufeld RR, Libow LS, Foley FJ, Dunbar JM, Cohen C, Breuer B. Restraint reduction reduces serious injuries among nursing home residents. J Am Geriatr Soc. 1999;47:1202-1207.
Wednesday, March 18, 2009
Adult Day Away Programs (ADAP) are offered in Ontario in various locations by various groups.
The programs have benefits for both the care giver and the care recipient. There are social and recreational activities delivered by trained workers. The purpose is to give some respite for those caring for seniors with cognitive disabilities or dementia.
I work part-time as a Peer Health Educator for The Friends, a non-profit Transfer Payment Agency in Parry Sound. They offer many services, one of which is an ADAP.
Where are they located?
They can be held in Legions, Community Centres, YMCAs, various locations in towns and cities across North America.
Many local groups offer these services, Lakehead, VON of Central Ontario, for example. The Alzheimer Society of Ottawa has a list of senior day care providers, check with your local Alzheimer Society for more information.
These program present opportunities for
- peer relationships
- assistance with ADL (snacks, toileting routines, lunch)
- recreational activities - cards, games, woodworking
- a safe, dependable routines
- guest speakers
Many of these groups offer transportation, as well, enabling caregivers to get some valuable respite from the demands of caring for others. Caregivers are at great risk for stress and this program provides the type of support that allows seniors to stay in their own homes longer.
Monday, March 16, 2009
There are a number of considerations:
- Do you want to hire someone? -As an employer you will need to understand labour laws in your country. Canada offers a Foreign Worker Caregiver Program.
- Should you go through a non-profit agency, i.e., American Red Cross, Canadian Red Cross, or the Canadian Victorian Order of Nurses?
- Should you use a private agency? Agencies, such as Qualicare, can provide you with a Nurse Manager who will take the burden of supervising a worker. Google and you will find millions of them from which to choose with no guarantee of excellence.
- Homemaker services (light housekeeping/meals), Activities of Daily Living (personal care, transfers) or IADLs, here is a list of possible duties.
- Do they require a driving licence?
They type of caregiver is determined by the support you need. If there is lifting, you will need someone trained in this (i.e., PSW). Home Care Worker Conditions can be difficult. You want the best services you can buy. Many agencies use formal agreements, with bonded caregivers who are trained and supervised.
- A homemaker can help maintain a home: house cleaning, errands, meal prep, purchasing food, transportation.
- A PSW is the best choice if there is physiotherapy, assistance with feeding, bathing, but cannot administer medications, or, for example, clip toenails. They do not do house cleaning or housekeeping. They can remind clients to take medicines. There are many volunteer Hospices that will assist with palliative care.
- An RN is best for serious medical issues involved, e.g., administration of medications.
- heavy lifting, carpet cleaning, pet care, gardening, snow removal.
What is uppermost in my mind is that you get what you pay for. There are many YouTube videos in which family members demonstrate abuse of loved ones by employees. Qualifications of your workers: homemaker, Personal Support Worker (PSW), or Registered Nurse (RN). You are trusting a veritable stranger to provide intimate care in a private setting. You must be vigilant and ensure that your privacy is protected. Protect yourself by securing personal items. This Woman Catches Caregiver Abusing Elderly Father. It is rather shocking.
I taped myself in 3 parts:
1. Why did I write the book?
Living and Dying With Dignity covers what happens after the diagnosis. Many have written success stories, but how do you cope when cancer or a brain tumour returns, especially as a caregiver.
- What are the things to watch for?
- What questions do you ask of a physician?
- What are your rights?
I want seniors to be prepared with Power of Attorney.
I want everyone to tell each other just what they mean to one another, just like Carol O'Dell suggests.
This section speaks of resources available to seniors. The privacy act (FIPPA vs. PHIPA), delirium and dementia, family member's responsibilities, communication between agencies, LTC access, limited budgets, baskets of services.
2. Book Content: see the full: Table of Contents
Suggestions: seniors and family members; patient advocates, asking the right questions of family physicians, surgeons, and/or oncologists. Part memoir, research on senior's issues, recommendations for family members, agencies and government.
3. Commentary on Senior's Issues
It is important to be proactive. Communicate to your family your wishes and needs once you are no longer able to function. This is a plan, not a treatment plan, but a conversation you have, perhaps a legal document, of how you want to be treated in the event of incapacitation on your part as a patient.
It is crucial that you designate someone to be your Alternate Decision maker, especially if you do not have family members who may fulfill that role. In the case of this necessity, there is a series of choices the medical profession will go to to in a hierarchical order.
The issue is when you are no longer able to make your own decisions, your loved ones must know your wishes, and having a legal document gives them the power to do so.
If you begin caregiving for an ill family member the Ontario Government has Labour Code that provides for Employment Insurance (EI) Compassionate Care Benefits. Family members must be at risk of dying within 26 weeks, which is a little bizarre, since physicians do not like to predict death timelines. But maybe that is just me!
Doctors need informed consent, and if you are incapable, they will seek consent from:
- Brothers or sisters, stepsiblings
- Grandparents and steps
- Grandchildren and their spouses
- Son-in-laws, daughters-in-law
- Father-in-law, mother-in-law
- Brother-in-law, sister-in-law
- Uncles, aunts, their spouses
- Nephews and nieces, their spouses
- Current or former foster parents, foster children, wards, guardians
To understand, here is more:
ACE: Advance Care Planning
The Ontario Seniors’ Secretariat publishes A Guide to Advance Care Planningwhich is available for free on the Internet or by phoning 1-888-910-1999.
Power of Attorney for Personal Care (PDF) (POAPC)
• A document in which a person (the grantor) names a substitute decision-maker
(an attorney) to make personal care decisions, which may include wishes about
personal care (advance directive portion
Saturday, March 14, 2009
By MICHAEL PEELING, STANDARD-FREEHOLDER
A doctor once based in Cornwall and a clinic owner have been charged for allegedly defrauding the Ontario Ministry of Health and Long-Term Care for more than $100,000 while operating a clinic in the city.
Dr. Brian Connolly, 52, of Malone, N. Y. and Lori MacDonald, 36, face charges by the OPP's Health Fraud Investigation Unit of fraud over $5,000 following an eight-month investigation into allegations they were billing the ministry for patient services not provided.
The United States spent $2.4 trillion on health care, or $1928 per person in 2006. That's at least 2.5 times more per person than any other developed country, yet the health of Americans lags behind those nations, said the Associated Press
Not sure I trust this site, though, as they ask for 'donations' to keep the (free) blog going!
Friday, March 13, 2009
You wonder how much you can do for your loved ones at this stage of their life. I felt myself lacking in experience and ideas when both of my parents passed away.
My mother died at home, of cancer, my brother and father were there. They were inexperienced, my father was quite ill with delirium, after radiation treatments for a brain tumour, my brother unschooled in being a caregiver. None of them realized how close she was to death. None of them, including the neighbours who were helping, thought to call me back to town. It broke my heart.
I was with my father when he died in his LTC room. I could have used the help of a service of volunteers familiar with death and the dying process. The PSWs would check in on me, bring me tea, but I simply stayed in his room - afraid to leave. He passed away around 4:00 a.m., just after I finally went to sleep. After a lifetime of caring for me, it was my turn to give back to him. I wrestled with understanding the dying process, how to prop him up for comfort, giving him liquids when he was no longer eating, and mouth care when he began mouth breathing. It was a difficult process about which I wrote more in my memoir: Living and Dying With Dignity: A daughter's journey through long-term care.
For more information I took the course based on this standardized Ontario program and text: The Fundamentals of Hospice Palliative Care: A resource guide for formal caregivers.
Published by the Palliative Pain and Symptom Management, Consultation Program, Southwestern Ontario, Canada. The course covers all aspects of the dying process: biological, psychological, social, spiritual, emotional, and practical applications, as well as pain management, and legal implications according to the Health Care Act and Power of Attorney.
Hospice Association of Ontario - publications, for more resources. You can find many local and regional hospices by looking in the phone book, too. They are non-profit centres with many experts, friends and volunteers who will help you with accessing services. I presented my book to Sandra Winspear, the local Executive Director of our Hospice Muskoka, to be used as a resource.
Thursday, March 12, 2009
For more information:
Read about the value of effective primary health care and interprofessional teams.
o The Health Council of Canada’s paper Value for Money: Making Canadian Health Care Stronger, p. 34. [link to VFM report page; URL not yet available]
o Fixing the Foundation: An Update on Primary Health Care and Home Care in Canada, also from the Health Council of Canada.
o A new report on primary health care teams, coming soon from the Health Council of Canada.
Watch videos from the Health Council of Canada.
o Paving the way through teamwork (managing chronic disease in Twillingate, Newfoundland)
o Critical care teamwork in rural BC
o Putting patients at the centre of care (Group Health Centre in Sault Ste. Marie)
What do you think?
Go to Canada Values Health for input.
Wednesday, March 11, 2009
We know how to prevent chronic diseases: stop smoking, eat well: a balance of food groups, exercise (FITT- flexibility, endurance, strength), relax, socialize, monitor your blood pressure, live well, and listen to your body.
The Canadian Institute for Health Information published a report: Reducing Gaps in Health: A Focus on Socio-Economic Status in Urban Canada. In it Low Socio-Economic Status (SES) is identified as a barrier to good health.
WHAT IS A BARRIER?
Within the Ontarians with Disabilities Act (ODA), a barrier is defined as “anything that prevents a person with a disability from fully participating in all aspects of society because of his or her disability, including a physical barrier, an architectural barrier, information or communications barrier, an attitudinal barrier, a technological barrier, a policy or a practice” (ODA, 2001).
Barriers to access can also include:
- family issues - dysfunctional families
- communication deficiencies or disorders: language barriers, auditory, visual, cognitive disorders
- bias or prejudice - i.e., inaccurate statistics: women die of stroke and heart disease
- fears - of diagnosis or treatment
- patients who do not speak English
- poor or ineffective treatment plans
- cognitive disorders - delirium, dementia,
- mental health issues
- mistakes in diagnosis
- attitudes: i.e., discrimination, being treated as incompetent, expressive or receptive language disorders
- Primary Care workers who speak down to patients, or use acronyms, or complicated language
- wait times
- lack of staffing
- crowded hospitals
They quoted a figure of 40% of patients who stated they experienced mistakes in surgery, diagnosis, discharge plans or home care interventions.
For this reason they suggest several steps, some of which I have already mentioned, and some that do not apply to Canadian hospitals, to avoid medical mistakes.
- Prevent infection - see my post on Superbugs.
- Invite family or friends to come with you as an advocate, especially if you are a senior.
- Take notes while speaking with physicians.
- Keep a medical journal.
- Get all the information you can.
- Ask for copies of tests results or numbers, i.e., ask for your blood pressure reading each time it is taken.
- Be honest with your physician. They need accurate information for an accurate diagnosis.
- If you sense that something isn't right, get a 2nd opinion.
- Take a list of your prescriptions into the physician.
- Ask health care professionals if they have washed their hands (hand sanitizer isn't good enough!) and/or cleaned their stethoscopes.
- Seek a treatment plan that suits you, not the surgeon or oncologist.
- Ask about contraindications of medications, side effects, length of treatment, and other options. (Your pharmacist is a valuable person to speak to.)
- Know which medications you are supposed to take and the dosage.
- Avoid wrong-site surgery: label the site, as well as the 'do not cut' site.
- Do not chitchat before surgery - to allow health workers to stay on-task.
- Accessibility for Ontarians with disabilities Act, The Legislative Library Office of the Legislative
- Assembly of Ontario, S.O. 2005, c.11 Cong. Rec.(2004).
- Act to promote patients' rights and to increase accountability in Ontario's health care system, 181999 Cong. Rec.(2006).
- Health Care Consent Act, Ministry of Health and Long Term Care(1996).
- Substitute Decisions Act, Ministry of the Attorney General, 0-7794-2147-7 Cong. Rec.(1996).
Friday, March 6, 2009
Which led me to ponder:
- How can I advocate for myself, while showing that I am an independent, cognitively functioning and capable person, despite having some wrinkles and gray matter in my hair, but not my brain?
- How can I be assertive, not passive or aggressive, and say no to demands upon my time?
- How can I show that need, want and deserve respect for both my time and my boundaries?
- How can I show respect for other's time and boundaries?
Why Communicate Issues to Family Members?
First and foremost, understand that many diseases and disorders are silent, and remain undiagnosed long after one would benefit from medical or pharmaceutical treatment, e.g., dementia symptoms can be reduced and ameliorated. Delirium can be prevented, through the careful monitoring of drugs and the Ontario Medscheck program available through your pharmacist.
That said, when you children show concern it is important to tell them the truth. Symptoms of dementia are easily covered up, well after the time when interventions can assist you. My father, for example, had trouble finding his own street when driving home. I knew nothing of this, and the doctor did not tell anyone. This is a sure sign of concern. If my father had had an accident I would have felt much guilt.
The Purpose of Communication
Communication is a multi-facted process: it is dependent upon effective listening strategies, body language, that lets the other person know you are taking in the information. Adult children are well-meaning. We want to ensure, first and foremost, that you are healthy and safe. As my parents moved from able and independent to frail and fragile, in their fights with cancer they took risks and depended upon other's for their ADLs and IADLs. They fought to cover up their frailty, devoting limited energy to activities, such as making us meals when we visited, that sapped them for days. That was their choice, and their decision, and I felt obliged to point it out to them. It is difficult giving advice, much harder to receive it. I knew I could have done better, hence this blog post!
Barriers to Communication
If you act like a child, or treat your parent like a child: covering up issues, making unsafe decisions (i.e., climbing on the roof to remove snow!), you might be compounding the issues. My mom acted like a child and I treated her like a child. It was crazy, when I look back! She refused to accept or admit she needed help with groceries, housecleaning, and other Activities of Daily Living (ADL). My mother, in her chemotherapy treatment lost her ability to think and act clearly. My father, after radiation treatment, had an infection and became delirious. We began to fight. I tried to ensure that Mom her needs were being met, but when that mother-daughter relationship changes, it is a new course to navigate. You need to renegotiate your relationship.
Family dynamics, bias, prejudice, ageism, family privacy issues, or physical communication issues (hearing impairment, faulty hearing aids) all provide barriers. Also, incommunicative physicians (lack of concrete test information - "you let me worry about that!") can complicate diagnosis, informed decision-making, and a treatment plan that takes you and your particular situation into consideration.
Passive-aggressive patterns of interaction can complicate issues, as well. If you usually give in, and allow others to control you and monopolize your time, it might be time to step up! By being assertive you show that you respect yourself and love the other person enough to ensure that both your needs are being met.
Ensure that your body language matches your emotions and your message: relaxed arms, facing towards the person, making eye contact.
When you communicate, ensure that you use "I messages". This sets up boundaries: that you remain in control, but that you are listening to their concerns. Such language as:
- "I feel upset when you speak to me as if I were a incompetent."
- “When you [their behavior], I feel [your feelings].”
- i.e., “When you yell, I feel attacked.”
- "I feel like a child when you talk to me that way. Please speak to me like an adult?"
- "I feel you are worried and appreciate your concerns. I will speak to my physician/specialist about them."
- "You seem to know something about [dementia, cancer, heart disease, cholesterol - fill in the blank!] can you bring me some more research-based information?"
- "I disagree with your opinion/idea/suggestion, but I will take it into consideration."
- "I respect your opinion, can you explain it more fully to help me understand it?"
- "I will take your concerns to heart. Will you accompany me to my doctor's appointment?"
- "I don't know the right answers, but I will make the best decision with the information I have at the time."
- "If I understand you correctly, you are saying..."
- "I understand that you are concerned, I will not do anything dangerous."
- "I know you love me, I promise not to do anything drastic without talking to you first."
- Make sure your body reflects confidence: stand up straight, look people in the eye, and relax.
- Use a positive, but pleasant and firm tone.
- Try to understand the other person’s motives, love, concern for your safety or others.
- When in a discussion, don’t forget to listen and ask questions!
- It’s important to understand family member's point of view - and let them know that you do.
- Work on a win-win solution: find a compromise or a way for you both resolve your concerns for health and safety.
These types of therapeutic conversations help the carer and the caregiver, as well as the care recipient. It shows that you take their concerns seriously. It open up the paths of communication, ensures that you can establish golas, expectations, values and beliefs that fit in with your family values. Effective conversations can prevent misunderstandings, and reduces anxiety, isolation, clarifies understanding, maintains a relationship of trust, improves pain and symptom management, and prevents conflict.
As a family member tries to advocate for you, and many of us must do so, it is important to show that you are listening to them. Many dysfunctional families do not function well during a medical crisis. Sometimes, anger towards a disease or disorder becomes displaced as you take out frustrations with the system or health care professionals, on family members. How many times have we come home stressed from work, only to take it out on our kids? It is modelled behaviour!
Pasacreta et al, (2001) in Textbook of Palliative Care, suggests that you self-advocate by
- provide concrete, neutral information
- prepare yourself before a stressful event
- increase opportunities to maintain control
- encourage participation in health care
- use a medical diary to record information
- acknowledge your fears
- explore near-miss events
- manage your physical symptoms (prevent pain, keep on top of it)
- structure uncertainty
- encourage hope
Pasacreta, J. Minarik, P., & Nield-Anderson, L. (2001). Anxiety and depression. In B. R. Ferrell & N. Coyle (Eds), Textbook of palliative nursing. (pp. 269-288). New York: Oxord University Press.
SHAQ Internet Assessment. To get an overall assessment of factors that can cause you to be too nonassertive or aggressive, take the Success and Happiness Attributes Questionnaire (SHAQ), which contains several scales related to relationships and assertiveness. This is the best place to start your program. You will get a chance to look at yourself in detail to see what self-esteem, internal control, nonassertive or aggressive beliefs, lack of assertive interpersonal skills, or other factors may be causing your nonassertiveness or aggressiveness. Go to http://www.csulb.edu/~tstevens/success.
Wednesday, March 4, 2009
It says that:
- Scientists are finding that the adult human brain is far more malleable than they once thought. Your behavior and environment can cause substantial rewiring of your brain or a reorganization of its functions.
- Studies have shown that exercise can improve the brain’s executive skills, which include planning, organizing and multitasking. What you eat can also influence how effectively your brain operates.
- Activities such as listening to music, playing video games and meditating may boost cognitive performance as well.
The article says further that there is research to support treatment of Alzheimer's Disease with exercise (mental and physical), healthy eating, remaining socially and sexually active, helping others, and reading and writing. See Canada's Physical Activity Guide, in the health living section.
There are many resources available from the government. We know so much on preventing chronic disease. It all involves balancing physical, mental, and social activities and looking after your eating habits. It also means protecting yourself from infections, especially superbugs, getting adequate home care, avoiding polypharmacy and generally looking after your health.
Sunday, March 1, 2009
My father's brain tumour was benign, in that it was not going to spread. However, the cells end up taking the blood and oxygen supply from other parts of his brain and he succumbed in February, 2007, after having his original brain tumour removed in March, 2003.
Mom’s leg was incredibly swollen. Without the lymph node draining her system properly, the fluid built up. I did research on massage-type lymph node drainage on the Internet, but no one performs this specialized treatment to a patient in her home here. She was too ill to go anywhere for it. Treatments include elevation of the body part affected, compression, and manual lymph drainage. Mom’s case manager arranged for a compression wrap that supposedly kept the water down. She was to massage her leg daily. It did not help. It was uncomfortable on top of her other pain, but she refused pain medications.
She was too tired to do massage herself, and I was afraid to massage her leg for fear I would hurt her. This condition was a result of treatment, and is called lymphedema, but we had been given no information on the risks involved in taking out the lymph nodes. There was no proof that the cancer would enter into her lymph nodes; it was a precautionary measure that proved to be contraindicated.
Once the lymph nodes have been removed, or damaged with radiation, twenty to twenty-five percent of patients develop lymphedema within twenty years post-cancer. This risk was not explained to her. Patients need to be warned that there are risks of blood clots, or back-ups of the clear lymph fluid in the skin tissues, which causes painful swelling. Lymphontario.org provides more information about this. Catherine Cotton (lymphontario.org) says that in order for such a procedure to be successful, there needs to be accurate assessment, a comprehensive treatment approach, and ongoing education and support for patients and their caregivers. This did not happen in our case. Our GP was unaware of either her pain, swelling or these treatments, and I spent many hours trying to research solutions. Mom was in such needless pain due to this surgical intervention. I felt incredible stress, since I could not figure out how to help her. There is a huge risk of complications with this treatment and we were totally in the dark about its implications, despite research and the best practices clearly being available.
At some point, a treatment plan may need to become a palliative care plan. This is a crucial part of the process and must take into account the patient and his or her family. Unfortunately, my mother went to oncology appointments alone and may have had some dementia due to the invasion of her cancer. She had hearing problems, and I am not sure that she heard or understood what she was told. Information was withheld regarding etiologies, morbidity factors, survival rates, and consequences of medical treatment, especially associated with an elderly patient. Medical personnel did not ensure that a very deaf woman, in the aftermath and shock of a cancer diagnosis, understood the information presented to her and the treatments she faced. My parents were exploited by a system that did not take the extended family into consideration and failed to determine appropriate treatment for failing seniors.