Dying well at home

hand massage

Have you done Advance Care Planning?

There are many stakeholders in healthcare, and all need to work together. Unfortunately, like many families, they don't get any more functional when illness strikes. You need to work well with your healthcare providers BEFORE anything serious happens. You must deal openly and honestly with your healthcare team, including telling them about smoking and drinking habits.
The Ontario government has begun to reduce funding to hospitals and instead direct it towards home care. This is all well and good, with a guarantee in the new budget for no more than a 5-day wait for Home Care services. While 40% of us die in hospital, those of us who want to die at home need to think this through carefully. Much work and research is required. With recent cutbacks to hospital budgets, I think they are robbing Peter to pay Paul! Many find, too late, that they end up in an ER, and would have done better in a hospice setting, or with volunteer hospice support.

• More than 637,000 people currently receive home care across Ontario.

There are barriers to dying at home. First and foremost, are the inhibitions many professionals have about death and dying. (Read more here:

What can the patient do?

1. Bring all medications with you for each appointment.
2. Record all of your visits to healthcare professionals, keep a journal of these visits.
3. Record all of your medications, and their dosages, place this in your wallet. The larger Ontario pharmacies prints this off with each dispense of medication. I tape it into my daytimer.
4. Demand copies of tests, and take them with you to specialist appointments, (e.g., your 'normal' blood pressure). 
5. Prepare a list of questions before your appointment. 

   

   Reiki
   

   
   

6. Treat your physician or nurse practitioner with respect.
7. Take a spouse, friend, family member to appointments. 
8. Have them scribe test results, and record the answers to questions for you.
9. Demand the truth from your healthcare team. Half the trick is knowing your prognosis, to the best of the practitioner's ability. 
10. You need to know the predictable disease trajectory. You must know what you might expect, e.g., lack of mobility, pain, need for foot care, biopsychosocial issues you may face. This will give you the opportunity to prepare, determine what you want to avoid, e.g., feeding tubes, and what you want to embrace, e.g., appropriate pain medications, alternative therapies (meditation, yoga, reflexology, Reiki, massage therapy) when needed.
11. Have you done Advance Care Planning? If you are in a coma, do you family members to keep this going? Do you want extreme measures, as in resuscitation? One UK study says, (Dying well at home: research evidence –PDF), "People's views were often ill-defined or poorly formed and frequently changed over time. Choices were often expressed as an inclination rather than categorical preference. People might change their minds to spare suffering of families, or because they had had respite care in a hospice and were minded to remain. In some cases, patients would not discuss issues as they had not accepted the prognosis."
12. Can you afford to die at home? Emotionally, financially, physically (i.e., access for healthcare support), environmentally. 
13. Can you ensure that your pain will be managed? Hospitals use CAD pumps to automatically administer medication. Some cancers are more painful than others, and require doctors to visit, when nurse's visits are restricted, or nurses prove less than adequate for your needs. Many face death in an ER, when they find family cannot cope and end up going to hospital without a bed.
14. Can you create a room for palliation, away from the ebb and flow of other family members? 
15. Do you have family members who can and will take time off of work? It is a huge emotional and financial burden for some, with one third of Canadians living pay cheque to pay cheque.

Keep your health information in a binder
For my late father, I found a duotang, and asked visitors to sign in.
In the binder, list your medications, map out a caregiving plan, visit times of support staff or volunteers.
Have someone do coordination of services, with specialist services when you are no longer able to do so.
Make up a schedule for volunteer support.

Ontario Proposes Investments in Home and Community Care

Alternative Therapies in a day hospice

An additional investment in the community care sector of $260 million in 2013-2014 would reduce wait times for patients. This would also help set a target for patients who require nursing services and those with complex needs to receive home care within five days of their Community Care Access Centre assessment.

Press Release from OPSWA re: abuse in long-term care home in Peterborough

Press Release

SHOCKING SENIOR CARE ABUSE CAUGHT ON HIDDEN CAMERA

How many more of our seniors need to be harmed before the government stands up and takes action?

Miranda Ferrier, President of OPSWA

TORONTO (May 21, 2013) –On Friday May 17, 2013 a link came across the desk of The Ontario Personal Support Worker Association.  As the official voice of Ontario Personal Support Workers and the industry’s only professional association, OPSWA was appalled to view the link.

Miranda (right)

Miranda Ferrier, President of The Ontario Personal Support Worker Association states, “This incident is the exact reason why Personal Support Workers need to be accredited by an association.  They need to be accountable.   Every one of the Personal Support Workers that are members of OPSWA are thoroughly accessed and checked before given their association number and card.  Each OPSWA member needs to stand behind a number of policies that protect them and the people and families they work for.”

The Ontario government has set up a PSW registry, active since June 1^st, 2012.  Unfortunately, every PSW is allowed to “register”, making the accountability and sheer purpose of the registry useless. 

The Ontario Personal Support Worker Association has been lobbying the government to add creditability to the registry for exactly the purpose of what is seen in the shocking hidden camera footage. 

The Ontario Personal Support Worker Association continuously strives to improve the professional status of the Personal Support Workers of Ontario through advocacy for excellence and consistency in training, services, working conditions, and value to those we serve. 

Quality and quantity of staffing in Ontario Long-Term Care Homes is a huge issue in Ontario and OPSWA will not back down from the fight until all of our loved ones are protected.

###

For further information on The Ontario Personal Support Worker Association or to arrange an interview with a spokesperson, please contact them directly.

Mr. Norman Gillies at Lanark Lodge

He giggles at his humorous stories!

Norman Gillies lives in Lanark Lodge. He's 95. He plays the piano, and he paints. He was married 68 years to his wife. Thanks to CTV Ottawa for sending out Joel Haslam to interview another of our wonderful seniors.

Mr. Gillies doesn't sell his paintings. He takes donations in lieu for Lanark Lodge. The paintings are very good!

There is a town, in Beckwith Township, named Gillies Corners. I wonder if this man is related?

I have found that many of my hospice clients have amazing stories to tell. Talk to one of them! You won't be sorry.

CTV Ottawa: Regional Contact: Painting Piano Man

Joel Haslam meets painter and piano man, Norman Gillies at Lanark Lodge in Perth, Ontario

Grief Resources Ottawa Workshop (GROW)

Grief Resources Ottawa Workshop (GROW!) is a new event for individuals in Ottawa who work in the field of grief and bereavement as professionals, students or volunteers.  This initiative emerged out of a community consultation coordinated by Bereaved Families of Ontario – Ottawa Region in the October 2012, where small discussion groups shared their hopes and vision for a local network of grief service providers.

From this beginning, a smaller team of volunteers (representing a variety of organizations, private practitioners and businesses) offered to carry forward the momentum to plan for a twice yearly workshop which will focus on:

1. Education /training

2. Support for grief practitioners

3. Resource awareness about grief support services

 The first GROW workshop is on the website at www.bfo-ottawa.org

--

Robin Macdonald

Volunteer and Cultural Outreach Coordinator

Bereaved Families of Ontario - Ottawa Region

Our task must be to free ourselves . . . by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty.

Here are two of the presentations:

PANEL PRESENTATION: An Exploration of Different Types of Disenfranchised Grief 

 What is disenfranchised Grief? Presented by Ian Henderson

Group work from Bereavement Art Therapy

 Grief is a reaction to all kinds of losses, not just death, and loss is difficult under any circumstances. To facilitate healing, the bereaved need to feel the support of others (and society) during the grief process. Disenfranchised grief occurs when an individual’s loss is not publicly recognized or acknowledged by others. Because their grief cannot be shared, the grievers face special pain and problems that can result in complicated grief.
 Topics to be addressed:
 • Defining disenfranchised grief.
 • Categorizing and examples of “types” of disenfranchised grief.
 • The primary conditions and reasons why grief becomes disenfranchised.
 • How disenfranchised grief violates “The Mourner’s Bill of Rights.”

 Ian Henderson is a certified grief educator and facilitator. He is a graduate of the Death and Grief Studies Certification Program at the Center For Loss and Life Transition in Fort Collins, Colorado. Ian offers support groups and one-on-one grief coaching to the bereaved. Ian has been presenting educational workshops for the last 7 years in the Ontario region.

Dementia and Alzheimer 

 Presented by Christine Hanssens

 Losing a person to dementia and Alzheimer is often called “a death before dying”. Grief related to loss of identity, memory, normal functioning in a person we love can be very painful yet it is often not recognized as authentic mourning because the person is still alive. What is often forgotten in this grief is the emotional burden on the caregivers. Christine Hanssens is a Psychoanalyst with a private practice in Ottawa.

Physical abuse, lack of integrity, by professional staff

There are huge issues in long-term care. I must say that I have never seen this kind of abuse, nor heard of it in any of the facilities with which I am familiar. It is not the norm, nor is it very common, as all of the personal support workers (PSW) with whom I have worked have been kind, caring people, with integrity and respect for the people for whom they provide intimate care.


Camera Reveals Shocking Abuse in Long-Term Care
The workers were 'suspended'


PSWs have minimum education (gr. 12 with college certificate courses in some cases), and can be poorly trained and are poorly paid, depending upon the employer. There is no requirement for in-service education, although the good employers demand it.
 Perhaps Fleming College should reconsider their partnership.
These staff members need to be fired and blacklisted, although there is no way to track PSWs.
This facility is in Peterborough, Ontario.
Their website says,

St. Joseph's at Fleming is ... a partnership between Marycrest Home of the Aged, Anson House, and Fleming College. A shining new example of excellence in long-term care and a model for future partnerships between long-term care and education, St. Joseph's at Fleming is setting the standard for compassionate care and innovation.

 
In February CHEX brought you the story of Hellen Macdonald. She suffered severe facial bruising and a broken hip at the hands of another resident of the long term care facility she lives in. Her son was not happy with how the incidents were handled by St. Josephs at Fleming, and the Ministry of Health. Camille Parent could no longer stand by and watch his mother suffer. So he installed a hidden video camera in her room in late April. What the video shows is alarming...

Son wants answers after mother's sudden death

Apr 11, 2013 – Gerry Mason holds a photo of his mother, Elieen Mason, 91, who died yesterday from injuries during an alleged fall at St. Joseph's at Fleming

As paramedics took Gerry Mason’s 91-year-old mother Eileen into the emergency room Sunday morning, her face bruised and bloodied, she told him something that has haunted him ever since.

“She said: ‘Oh, Gerry, look what they did to me,’” Mason said. “That is just echoing in my mind every second.”

Mason is calling for an inquiry into the death of his mother, who was hospitalized Sunday and died Wednesday morning, after she was injured at St. Joseph’s at Fleming, the nursing home where she has lived for about two years.

How best to research health issues

I taught my students how to search for accurate information. I also taught them to type "AND kids" to keep them away from adult-content sites. This is a Boolean Operator.

Boolean searching is built on a method of symbolic logic developed by George Boole, a 19th century English mathematician. 

Yes, while there is much information on the Internet, there is much garbage, as well.
The same is true now, twenty years later, only there are many more webpages, created by people only wanting to sell you something.
As with magazines, who sell advertising based on subscription numbers, a web page can gain a higher search engine profile by simply attracting you to their site. (This is called SEO.)

In order to find accurate information, you must ensure that the site you are visiting has
1) Authority: an agency or a government hosts the site, a professional or a journalist writes the article?
2) Accuracy: Written by professionals, with credentials, well-researched, with sources cited.
3) Objectivity: Isn't connected to a particular pharmaceutical, or one trying to recommend a particular drug from one company and is unbiased, and accurate.
4) Intended Audience and Level of Information: for patients or professionals?
5) Date of publication (within the last 5 years)
6) Scope/Depth/Breadth: Is it comprehensive, does it include various points of view? Do you a quick read, with 'How Tos' or a chat room where you can talk to other caregivers or care recipients?

There’s a lot of information at PubMed Health, for example, and lots more is added every week. Also, look for Health Canada (www.hc-sc.gc.ca/) websites, or whichever national or municipal government that applies.

I have a hard time doing research myself. I get frustrated with the ads, and the stolen information. Google Scholar is a good engine to use, as it looks for juried articles, done by the pros. That said, many journal articles are controlled by invisible parameters, and some gets published that shouldn't be. Journalists often misinterpret a published item, saying we should avoid milk, for example, based on a small, invalid or unreliable study.

When you search for items, you must remember that infamous

Boolean Operator Search:

1. Using the words NOT, AND, OR (in capital letters) ensures that you either exclude, include or find synonyms you may not have thought about.

2. Using a truncated word, you might want to use prevent*, whereby the search engine will find words like prevention, or preventing. An asterisk (*), question mark (?), or pound sign (#).

3. If you use quotes, "breast cancer", you will ONLY find breast cancer-related information. Don't use them if you don't need to look for related information.

4. Don't use Stopwords- words that slow down a search, will be ignored, or complicate it:

• articles (a, an, the)
• prepositions (of, on, in, with)
• conjunctions (but, however).

In Appreciation of our Volunteers

CHSLC

Once again we would like to say “Thank you” to our team of 443 volunteers who
have given so generously of their time over the past year. From April 1, 2012 to
March 31, 2013 this fine group of people have contributed a great deal of time
providing caring, quality service to 2395 clients.

Our volunteer drivers have made 22,063 one-way trips and have travelled
1,044,991 km – all in an effort to ensure that clients get to appointments in a
timely, reliable manner.

The Meals on Wheels volunteers delivered 21,430 hot lunches.

The trained volunteers of the Volunteer Hospice Visiting Service drove 93,592
km to visit 5,468 clients who were dealing with a life-limiting illness, dying or
bereaved. The compassionate care and attention of the volunteers also extended
to family members and friends.

Case Studies - this is what aging looks like #60 - 64

#60 A 70 year old female bereavement client is having surgery on her foot tomorrow. She will be home sometime tomorrow afternoon. She is not getting any CCAC services nor does she have any family living close by. She needs a volunteer to give her a call and a visit to check on her.

 #61 An 80 year old female client living in rural Ontario is in need of a weekly volunteer visitor to assist her with running errands and shopping. She recently had a left hip replacement and is still convalescing at a retirement home. She will probably be there for another week and then she will move back to her apartment. She has multiple health issues including osteoarthritis, osteoporosis, high blood pressure, anxiety and depression. The support of her daughter is limited as her daughter works full-time and is supporting a palliative mother-in-law in her home. The client lived in the prairies; taught music (with no papers); played piano; was in a choir; and worked at a library.

 #62 A live-in caregiver needs respite from a volunteer. He is caring for an 84 year old gentleman at the end of his life. The needs of the client for overnight support are bi-weekly basis. The client has colon cancer with metastasis to his liver. He also has metastatic lung cancer. Both he and his wife are receiving medical care in the home. His wife has had 3 brain aneurysms which have left her very immobile and also with aphasia. The volunteer needs to be comfortable providing light assistance transferring the client from his bed to a walker. He does not weigh very much and is currently only tube fed. The volunteer may be needed to provide toileting and/or brief changing assistance. The client is a retired heart surgeon.

#63 A volunteer is needed to visit a 93 year old male client in the hospital. He is very ill with cancer that has metastasized (lung, bowel, bones, spine). He very recently lost his wife of 70 years. He loves to hear stories and tell stories. His mind is very sharp. He sleeps from 2 to 5 p.m. every afternoon and would love a visitor around 5 p.m. over the supper hour through early evening. Now that his pain is being managed, he loves to eat and would also enjoy it if the volunteer brought something to eat as well.  He worked with homing pigeons and did carpentry work, making items for a shop in a museum. His hobby has been his family, organizing picnics, fishing, camping and spending time at the cottage, during a 40-year career. His prognosis was 3 months – a month ago. He is now on the list for long-term care. He has gained a little weight and is hopeful to get to a LTC, but it has a 2-year waiting list. His family is trying to keep him as comfortable as possible in the hospital. It is quite an undertaking as 6 chronic/palliative care beds were closed in the our local hospital this past March.

#64 A volunteer is needed to provide support on a casual basis to an 80 year old man. He lives with his son who is needing some respite. Depending on the weather, the son will be going on a canoe trip this summer. Working with the CCAC, volunteers are needed to fill some afternoon shifts. The client has early dementia and some internal bleeding that is being investigated. He has high blood pressure and peripheral vascular disease. He has glaucoma and macular degeneration. He needs assists with meals and prompting the client to take his medication. The client is not allowed to use the stove.

Mesothelioma cancer survivor who has fought incredible odds with her family

Published on 7 May 2013

http://www.mesothelioma.com/heather/ | The story of Heather Von St. James, a mesothelioma cancer survivor who has fought incredible odds with her family.

Where do you want to die?

It was an interesting phone-in show (see below). I was the second caller.
I explained that Mom died at home; Dad, 9 months later in long-term care.

Neither was ideal. What is ideal, is to die in a hospice building. The government doesn't pay for them. Once a hospice building has been established, they will help with funding, but locals have to fundraise enough money for buildings, retrofitting, sustainability and this takes a lot of money.

This is why there are only 65 hospices in Canada, with 29 in Ontario. I visited Heart of Hastings Hospice last year. We also have May Court in Ontario, and I visited the one in Bancroft, but there are many communities where hospice fundraising has gone on for 10 or more years, with big chunks of money sitting a bank waiting for sustainability.


This is why only 60% of those with cancer die at home: for most of us, it is the easiest place to ensure quality care and to access a homey atmosphere, but it can be difficult to keep patients clean and pain-free.

For some, it is selfish to want to die at home. Adult daughters and spouses carry the burden. Not all are able to manage to help a loved one have a good death. Not all can afford it. Not all are emotionally or physically prepared for it.

Dying With Dignity

Primary Care Staff traditionally is reluctant to make a palliative diagnosis. In many cases they do not know 'how long' a patient has. There are many barriers to death with dignity. I have come across people who have taken off the 6 months work, only to have the patient survive longer. For those who are unaware of the prognosis, it can be a difficult time. I have found that my clients with money and education to advocate, have a more dignified death. There are many, also, who eschew death with dignity in order to stay at home. This has a huge impact on the quality of their dying. It also has an impact on family members.

Quality of the last days or hours: Disease Trajectory

Mom was adamant, despite that, the day before she died my brother took her into the ER, after the doctor asked if she wanted to die at home. It was a needless visit, as many are, with them getting home in the wee hours, only to have her die at 9 in the morning.
 Dad had dementia. He didn't understand what was going on. He was in a coma for the last three days. I fought for 3 months to get him better pain management.

Palliative Protocols

Patients need mouth care. They need to be turned every couple of hours. They need sips of water and minimal food. Not all caregivers know this, few healthcare staff communicate this. Families may not be able to afford to provide extras that keep a patient comfortable.

Incontinence & Mobility

Neither was able to use the toilet. Both wore adult briefs. The last thing I did for my mother was to put on a clean brief. Dad needed a lift to get him out of bed. Can you lift your family member?

Pain Management

Mom's pain wasn't managed, she didn't bother having her morphine prescription filled when she left hospital.
Dad's pain wasn't managed, as none of the healthcare professional believed he was in pain until the very end. I complained to the Ontario College of Physicians and Surgeons.
They also need to keep a diary, to better understand the disease trajectory. There are many tools that will help, such a the Palliative Performance Scale test. Family members may have to fight staff, despite knowing their loved one is in pain.

Dying in hospital Ontario Today

Most people don't want to die in a hospital. But new research shows that's where 40% of terminal cancer patients in Ontario end up dying.   

Yesterday's guest on@CBCOntarioToday was @CanadianHPCAssn's Executive Director Sharon Baxter
Links suggested by CBCO's guest: 

Advanced Care Planning

Canadian Hospice Palliative Care Association Home Page (CHPCA)

Advance Care Planning Tools/Resources