Future Planning When Capacity is An Issue: A New Deal

In my last blog post, I wrote about the messy business of overriding bad decisions that vulnerable loved ones sometimes make. The potential for anything from hurt feelings to fisticuffs is clear and present when families disagree with a vulnerable relative on treatment plans, housing solutions, care needs or any other matters of daily living.  When an adult loved one is deemed to be lacking ‘capacity’ or the ability to make important life decisions in his or her own best interests, there are usually only a few legal alternatives and none of them are ideal – at least as far as the vulnerable person is concerned. 

THE STATUS QUO

In most places there are two sets of tools: one set that is available to people who are deemed to have legal capacity and one set that is used when people are found not to have legal capacity. Furthermore, there are tools available for financial decisions and tools available for health and personal care decisions. Powers of Attorney enable people to designate another person to handle their financial affairs. A person must have capacity to sign over Power of Attorney.  We have Powers of Attorney for my mother – one for finances and one for personal care decisions.  We also have a separate ‘bank’ Power of Attorney that allows my sister and I to handle Mom’s banking at her branch when she is unable to go to the bank herself.  For Nicholas, we have a Power of Attorney that he signed over to us and we used it to open his bank account when we moved from the UK to Canada in 2011. 

Personal Directives, sometimes called Advance Care Directives are used to appoint another person to make health and personal care decisions. Personal Directives might have different names in different jurisdictions. Personal Directives can also only be written if a person is deemed to have capacity. They are usually designed to be used when the person can no longer give consent for treatment or care.

Adult Guardianship is used in the case of adult disability to appoint a substitute decision-maker when a person is found not to have capacity and needs someone to manage their financial or legal affairs or to make decisions about their health or personal care. Adult Guardians are also sometimes called Committee, Trustee, Curator. Generally, Guardians have full authority to make decisions on behalf of the person. In some places, such as Ontario (Canada), Guardians are granted powers only in areas in which there is a need for substitute decision-making and there is an expectation that they consult the person to determine their preferences and wishes.  Under adult guardianship procedures, if an individual is declared incompetent/incapable, they are legally a non‐person.

THE REVOLUTIONARY IDEA

All the really revolutionary ideas in social care have come from families.  Strategies to create legal frameworks that support loving relationships and enshrine the moral personhood of vulnerable people are tricky to design, but a group of families and professionals did it in British Columbia, Canada.  Here’s how:

Supported decision making is different from substitute decision making. Substitute decision making is when someone takes the place of an individual who is determined incapable of managing their affairs or making decisions. The substitute decision maker acts on behalf of and in the best interests of the individual. This is the approach reflected in Power of Attorney and health care proxy decision making.  The trick for policy-makers was how to create a legal framework for supported decision making.  In BC, they did it with the The Representation Agreement Act.

No one writes with more authority about this issue than my colleague, Al Etmanski.  Al is a Canadian change-maker with international impact.  He was a prime mover in this and many other pieces of legislation in BC supporting vulnerable citizens and their families.  

Al describes the BC policy this way: 

The Representation Agreement Act of British Columbia was created from a philosophy that views people as capable even if they cannot manage their own affairs or give informed consent. A representative(s)is always listening to the individual’s communication (all forms of communication are recognized) to enable them to participate in decision making. A representative not only preserves an individual’s self‐determination, they strive to enhance it. A representative does not take the place of the individual, they act as a bridge to help third parties know and interact with the individual.

Supported decision making is not just support with decision making. It is a process of supporting and celebrating the individual’s capability and identity – their personhood. The Representation Agreement Act was created to provide an alternative to adult guardianship.

The Act was created with the disability community in mind, but it serves older people who suffer from dementia as well.  It can also be useful in some cases of mental illness.  It's a great piece of legislation that assumes personhood can come in many forms, and that everyone has a right to be involved in decisions that effect their own life.

For more information on the Representation Agreement of British Columbia and its impact on both adults with disabilities and elderly citizens with Alzheimer's or dementia, see: 

http://www.nidus.ca/ (Nidus Personal Planning Resource Centre and Registry) and

http://www.aletmanski.com/al-etmanski/2011/09/representation-agreements-angels-in-the-architecture.html (Al Etmanski's blog - 

When Patient Choices Are Harmful

Sometimes, my son makes bad choices.  So does my mother.  Nicholas almost always decides what he wants (and what he doesn't!) based on short term pleasure (and pain avoidance).  This means, he will NEVER choose to have an injectable medication, an enema, or go the ER, even if his life depends on it.  Luckily, Nick's caregivers and his family know his foibles and together, we make sure that if our young man needs treatment, he gets it, no matter what.

With Mom, it's different, but the problem is essentially the same.  She doesn't like the food at her seniors' residence, so she removed her name from the meal plan.  To be honest, a lot of it does not agree with her delicate digestive system, so she has a point.  But in her apartment, she can't be bothered to eat the chicken sandwich my sister has made or even her favorite rhubarb pie that I brought last week.

Sometimes, bad choices that vulnerable people make can have terrible consequences.  My friend is a foster Mom to a LOT of children with disabilities.  One of her foster daughters had a developmental disability as well as a tracheotomy, a breathing tube that needed suctioning on a regular basis.  When the young teenager went into a nursing home for a few days to give my friend a break, the nurses did not suction the tube.  Why?  Because my friend's foster daughter waved them away.  She didn't like the suctioning, so she 'refused it'.  Mucus eventually blocked the tube and my friend's foster daughter died.

The problem of championing individual choice at all costs is particularly dangerous in the case of cognitive impairments.  Another friend's Mom was hospitalised with the physical effects of advanced Alzheimer's.  When my friend arrived at her mother's bedside, she asked a nurse when her Mom had last had a bath.  "Oh, she hasn't had a bath since she arrived here.  She said she didn't want one."  My friend was incredulous - "What do you mean, she didn't want one?!  She doesn't know what she wants, she has Alzheimer's!"  My friend wheeled her mother down the hall and bathed her herself.

Many home health care workers and other health professionals are trained to respect patient choice.  And that, of course, is a very good thing.  But sometimes, that can have harmful, even fatal consequences when common sense isn't part of the equation.  Have you had an experience where the rule of patient choice has been applied without the benefit of observation and common sense?

Meet My Mother - A Natural-Born Activist

My mother is, well, unique.  When I was in kindergarten, I walked to school - alone.  All the other children were dropped off by their parents, but my Mom just woke me up, left a bowl of cereal at the end of my bed (who doesn't love breakfast in bed?) and after we both got dressed, she left for work and we parted ways at the front door.  Mom was the only woman in our neighborhood to be employed outside the home.  She had no interest whatsoever in cooking ("Here, eat this peanut butter sandwich so you won't be hungry anymore") and she cleaned, but not for fun.  My Mom was the original independent, hard-nosed, who-cares-what-the-neighbors-think feminist.

Mom's moral compass is embedded in her DNA - she didn't learn right from wrong at university - she never went.  After the depression, only the boys had that privilege.  But Mom always had a job; usually as a secretary at our school.  She always took jobs that allowed her to be home with us during school holidays.

Growing up, I watched with a mixture of fascination, mortification and eventually pride as Mom would become exorcised over some perceived unfairness that my sister or I suffered at school.  On my first day of grade one, Mom let my teacher have it.   After school, I told my parents how during class, I had put up my hand to ask for a drink from the hallway water fountain.  The day was scorching and in those days, there was no air conditioning.  The teacher refused to let any child out of class, even for water.  Mom worked in my school as the secretary and the principal was also our parish priest.  My first day at that school was also my last and I was transferred out of Catholic school into our local public one.  The priest came knocking on our door at home and pleaded with Mom to put me back into Catholic school, on religious grounds.  He might as well have been talking to a post.

Once, I remember that my Dad made the mistake of telling Mom (who was dressed in her pyjamas at the time) not to have her morning coffee and cigarette on our front porch.  "I don't want the neighbours to be looking over here", he said.  That was Mom's cue to dance around a birch seedling in our front lawn, may-pole style.   My sister and I screeched with laughter and Dad just shook his head.

When my sister Karen had premature twins, Mom was there for night duty.  When Nicholas was diagnosed with disabilities, Mom arrived with a pot of 'stew' (her signature dish), boxes of chocolate cookies (the marshmallow kind called "Whippets") and cuddles at the ready.

When the children were small and I became exhausted from round the clock care for Nick, Mom invited me and Natalie on a holiday to her rental property in Florida.   Even though Natalie was only three, Mom 'taught' her how to play tennis, letting me sleep for the first two days of our holiday.

(Florida with Mum and StepDad Bill)

Once, when the children were a little older, Mom came to visit and help out around the house.  I arrived home from a therapy appointment with Nicholas to find my mother outside on ladder, cigarette dangling from her lips, washing the windows.  She was about 70 at the time.  "Mom!  What are you doing?!  Get down from there!", I shouted in alarm.  "Well, the windows aren't going to wash themselves, they're dirty.  And where's your ironing?  I'll do that when I'm finished.  You go lie down. Now."  That was Mom - direct, unapologetic, funny and slightly outrageous.

Today, Mom still smokes and enjoys her chocolate bars with a rum and coke.  She plays a mean hand of duplicate bridge and beats me every time at scrabble.  A couple of years ago, Mom got so annoyed at the cost of cigarettes, that she wrote a letter to the editor of her local paper voicing her opinion that seniors who contributed to the war effort should be exempt from paying taxes on smokes.

What did I learn from my mother?  I learned resilience, assertiveness, kindness, loyalty and a passion for justice.  These are all qualities that I endeavor to use daily in my work as a caregiver activist.  Thank you Mom, and Happy Mother's Day.  You are one of a kind and I love you.

When A Family's Love is Not Enough

There are some people who, in the prime of their lives, cannot conceive of getting old.  They imagine that only other people have babies with disabling conditions.  They champion independence and despise infirmity.  Those people might believe that if anything catastrophic ever DID happen to them, then surely the government or some agency or other would step in to help.

Wrong.

Families living in the trenches of caregiving know only too well that there is not enough help (if any at all).  Day programmes, respite care, supported housing options, home nursing are all just pie in the sky dreams for many who cannot afford to pay privately for all the services they need.

My last post told the story of an Ottawa (Canada) mother, Amanda Telford, who was forced to abandon her 19 year old son Philippe in the offices of the local social services center.  Philippe Telford-Chiasson has a  severe form of autism, challenging behaviors, tourettes syndrome and diabetes.  Last week, he ran away, managed to unlock a medicine cabinet at home where he found and swallowed 14 blood pressure tablets and then ran away again.  Amanda Telford and her husband lost most of their support services once Philippe turned 19. (Adult services in Ontario are poorly funded and waiting lists for services are years long.)  The events of last week were the last straw and all of Canada watched on the evening news as a devastated mother said a tearful goodbye to her son on the steps of a government building.

Families like the Telfords have something in common with the legions of caregivers struggling to manage the complex needs of relatives with cancer, Alzheimer's, stroke or any number of disabling conditions.  Sometimes, the medical and social/emotional needs of a loved one are just too much for one person or even one family to manage.

We can share the social/emotional care (although it's trickier in the case of mental illness) and specialised web-based platforms such as Tyze Personal Networks are terrific for that.  But we can't share nursing or personal care.  We can't ask friends or family to stay awake all night to prevent someone wandering or monitor respiration.  We can't ask them to change dressings or assess medication side-effects.

The demographics of aging are unprecedented - huge numbers of baby boomers are aging into disability and people with disabilities are living into old age.  So, what can we do?  What will be required of citizens, governments and businesses to ensure that we don't find ourselves in Amanda's Telford's nightmare, or something like it?

Part of the answer to that question is in the latest newspaper report on the Telford case titled "Autistic teen left by mother gets a home".  The key sentence in the article is this: (Amanda Telford) "What I really like is that developmental service agencies came together and worked with Champlain District CCAC, which is Ministry of Health funded."  Philippe Telford needs developmental services because he is autistic and has developmental disabilities.  But he also has complex health challenges due to his diabetes.  Two government ministries worked together to create a solution that resulted in safe housing with appropriate support, and that is novel.  Inter-ministerial funding, to say nothing of public/private partnerships are difficult to monitor.  For bureaucrats, the need for accountability and transparency can sometimes override service provision in their list of priorities - we live in a very risk averse society and politicians know that vulnerable people and their families can represent a political minefield as well as a financial sinkhole.

But sharing the burden of care across government ministries IS the way forward.  Someone will just have to figure out the accountability issues.  Helping all the older people in our society to stay at home longer, helping their families to stay healthy and happy, enabling young adults with disabilities and their families to plan their futures without fear and dread - all these things can be done.  To do so, we need to share the financial burden across sectors AND seek innovative business opportunities that have shared social objectives as well as sustainable financial models.

In my own family, we DID find ourselves in something like the Telford's nightmare.  It was 2004 and my son Nicholas had uncontrolled hip pain.  Oral morphine, muscle relaxants and nerve blocks did nothing to stop the screaming.  A complex condition of untreatable sleep apnea put Nick on the palliative care list - doctors said he might have two months to live.  Maximum allowable levels of home nursing support hardly touched Nick's complex needs and our case was brought forward to our local 'committee of last resort'.  A full fledged appeal to override policy on maximum support began in earnest.  When I complained to a nurse that the prescribed amounts of pain medications did not alleviate Nicholas' excruciating pain, I was charged with child endangerment because I had reported to a nurse that I gave a small amount of extra morphine at 3am when I could not reach the hospital pain team by phone to advise me.  The Children's Aid Society inquiry found that Nick was at risk due to lack of services - they declared the care we gave to our son was exemplary.  The case reached the provincial appeal board where senior representatives of multiple government ministries discussed how to help us and how to pay for that help.  Finally, we got a deal - a deal that paid for nursing care Nick needed.  But that deal ended the day our son turned 19.  I tell this story in my book, "The Four Walls of My Freedom".

In both Canada and the UK, representatives of Health as well as Social Services would talk about our son and point to each other, saying "this case is for you!"  For many years, as with the Telford family, nothing happened due to political wrangling and our family paid dearly for that inaction.  In our experience, the system failed when they tried to assign Nicholas to just one homecare budget.  We received the support we needed when multiple partners came to the table to collaborate and innovate.

As a country that is part of North American society, can we assist the needs of vulnerable people and their families in ways that are individual, imaginative and flexible?  Can we bring social entrepreneurs into the equation to link communities and families with medical education opportunities such as perhaps health care certification for trained new immigrants?  Can we begin to value the giving and receiving of care?  I believe that we can do all these things.  The first step is realising that no one family, no one government funding entity, and no one sector of society can do it alone.

Amanda Telford Is A Good Mother

Families of adult children with disabilities in Ontario, Canada, are in the news today.  An Ottawa mother, Amanda Telford, 'abandoned' her son Phillip (aged 19) in the offices of Ontario Social Services and the lines in her tearful, exhausted face tell a story of frustration, isolation and lack of support for her family. Telford's son Philippe has severe autism, developmental disabilities and challenging behaviors.

A few days ago, Philippe escaped from the family home and wandered to a restaurant three miles away before he was found.  The next day, he managed to open a locked medicine cabinet and swallowed a bottle of blood pressure pills, necessitating a seven hour stay in the ER before he was declared healthy and fit to return home.  When he reached home, he escaped again.

Philippe Telford requires twenty-four hour one to one supervision to keep him safe.  He is non-verbal and very physically strong as well as agile.  When Philippe turned 19, his access to school ended and his name went on a long waiting list for day programs and supportive housing.  Philippe must wait for someone currently receiving service to pass away before he will be offered assistance.  And there's a good chance that Philippe is not even at the top of the waiting list - clients whose parents are dead have top spot.  Amanda Telford abandoned her son in order to get him the services he needs to be safe.

Currently in Ontario, an inquiry is being carried out by the provincial Ombudsman into the crises of families who are struggling to support their adult with developmental disabilities.  So far, the Ombudsman has taken statements from 700 families in crisis and that number is growing quickly.  Families are desperate and push has come to shove.

Institutions to support adults with disabilities in this province and elsewhere have closed, and that is a good thing.  But the funds realised from the closure of those facilities have not been reinvested into families who support the next generation of children with disabilities growing up.  Community care policies were developed 'back in the day' when a developmental disability was a life-limiting condition.  As recently as twenty-five years ago, medical textbooks listed the longevity of someone living with Down's Syndrome as 21 years.  Today, those without complicating medical conditions live normal life spans.  Today's young adults are the first generation of people with disabilities who live outlive their parents - ever.  And no government anywhere is ready for this social phenomenon.

Two things we know for sure:  1) we have growing numbers of people aging into disability AND increasing numbers of people with disability aging and 2) community care budgets are being impossibly stretched due to these demographic changes, pitting an aging population against people with disabilities.  

Today, a CBC radio show "Ontario Today" took calls from families in crisis trying to find day programs and housing solutions for their adult children with developmental disabilities, including autism.  I hope that both provincial and federal authorities involved in social care policy heard the program.  Every parent caller knew what kind of help they needed.  They had developed solutions that were  creative, responsive, collaborative and fair.  Many parents expressed a wish to co-pay with government such solutions and to remain significantly involved in their child's life.  Every parent who called in was exhausted, desperately worried, and very angry.  But, they also expressed the deep and abiding love for their vulnerable children, the same as any parent would express for their able-bodied child.

Our society used to have institutions for vulnerable citizens.  Then the institutions closed and families were expected to 'look after their own'.  But families cannot look after a vulnerable child forever.  Parents get old and infirm, or they die.  Direct care and housing solutions need to be co-created by families together with policy-makers.  The will is there, the time is right.  Let's do it now.

METTA: Loving Kindness - How to Feel It, How to Spread It

I peer at an x-ray of my spine.  I'm looking at my neck bones, trying to figure out why my right arm is constantly numb or tingling... why my hand itches and sometimes I feel electric shocks in my shoulder. I know my lower back is shot.  Disintegrating discs mean that I have to be very careful lifting anything heavier than about 20 pounds.

It wasn't always like this.  For years, I lifted Nicholas.... right up until he was 18 and nearly six feet tall. "Hey Nick", I'd say, "You are my personal trainer!  No osteoporosis for me - I'm as strong as a WWE wrestler.  I kick butt!"  And we would both giggle at my ridiculous effort to imitate his wrestling superstars.

Regrets?  I have a few.  One of them is lifting Nicholas so long without bothering to use a lifting device.  We eventually had a ceiling track installed, but it was always so much quicker just to lift Nick myself instead of bothering with the sling.  Now, I am paying the price for thinking that I was immune from the wear and tear of repetitive strain.

So, this week, on doctor's orders, I had a massage.  Karina, the massage therapist has the build of a long -distance swimmer and the manner of a zen healer.  She runs a clinic near my home called "Metta Message".  I asked Karina about the meaning of Metta and she explained that it is a Buddhist practice of meditation.  "Umm humm," I was relaxed, listening at this point.  "Anyone can practice Metta.  It involves the contemplation of loving kindness - the sort that you feel for your new baby."  My eyes opened and I began to listen very intently.  "You begin by directing all that loving kindness to yourself, as if you are the baby.  You meditate to fill yourself up with loving kindness.  That way, you are ready to begin giving it to others."  "Ohhh", I thought.

Here is how the Wikipedia explains the Metta practice:

The cultivation of loving-kindness (mettā bhāvanā) is a popular form of meditation in Buddhism. In the Theravadin Buddhist tradition, this practice begins with the meditator cultivating loving-kindness towards themselves,^[7] then one's loved ones, friends, teachers, strangers, enemies, and finally towards all sentient beings. In the Tibetan Buddhist tradition, this practice is associated with tonglen (cf.), whereby one breathes out ("sends") happiness and breathes in ("receives") suffering.^[8] Tibetan Buddhists also practice contemplation of the Brahmavihāras, also called the four immeasurables, which is sometimes called 'compassion meditation'^[9]

So, last night, I didn't sleep well.  I woke at 3:45am and worried.... about Nicholas, about my mother who took a fall yesterday, about my daughter whose last exam at university is today.  And I thought of Metta.  I began to breath deeply and slowly.  I thought of myself as my own precious baby.  My thoughts kept straying to tasks, events, past transgressions.  But I will try again.  This Metta is a very good thing for caregivers.  Perhaps Buddha himself was a caregiver. 

I'm a Professional Caregiver and You're Not

When I was a teenager, my Dad had a series of strokes.  When Mum went into the hospital for minor surgery, a woman in a white uniform arrived in our house to take care of Dad.  I couldn't stand her and she didn't think much of me.  In those days, I was studying theatre at university and rehearsals often lasted till well into the night.  This nurse disapproved of my hours, of the state of my bedroom, and I suppose she disapproved of the way that I spoke to my Dad (normally).  I was glad to see the back of her.

Over the years, I've learned a lot about the power politics that sometimes play out in homecare.  I have learned that caregivers who are team players by nature often become like members of our extended family.  I have learned that in home nursing for children, the rules of agencies are often at odds with what families need (eg. we don't want uniforms that remind my child of hospital stays and painful procedures).  All families are different and families have the right not to be judged in their own home.

For the most part, we have had wonderful paid caregivers in our home - people who honestly loved my family members with care needs and respected our way of life in our most private domain.  Once in a while though, a nurse would arrive who insisted on the uniform.  We had a male nurse who insisted on changing everything around in Nicholas' room to be more 'like we do it in the hospital'.  He constantly referred to me as 'Mum'.  Calling mothers 'Mum' is standard fare in hospitals where doctors see so many sick children that they cannot possibly remember parents' names.  But at home, I wasn't having it.  "I'm sure your mother would rather have exclusive rights to being called "Mum" - please do call me Donna.  I insist, as this is my home", I said, smiling.  My little ploy had no effect and this nurse continued to wear his uniform and call me "Mum".  We replaced him.

Palliative care is a discipline that has mastered the art of working with families.  Homecare workers of all levels are team members with caregivers, but it's the patient and family who are the acknowledged leaders. Our palliative care doctor (and all his staff) were the best example of team players I have ever seen.  Basically the message was "what would you like to do about this and how can we help?"  Naturally, that is a very different message from one in the hospital where you need the professionals to take charge and direct treatment.  But even then, in the case of chronic care and lengthy hospitalisations, the relations between family, patient and professionals rightly take a shift to be more relaxed, open and collaborative.

One thing I know is that I cannot give care alone.  For my complex relatives, it takes a team of family together with professionals from across disciplines and levels of qualification.  Besides great professional skills, I look for friendliness and flexibility in our prospective team members.  Oh, yes, and a sense of humour.  With those qualities, we're bound to be friends for life.

Sometimes caregivers are silly. We like that.

And we like it when they are kind.

I could tell so many stories of the kindness of our own team members.... doctors who hugged me, nurses who cried with me, and our forever friends who have lived with us and helped me with whatever we needed in the way of, well, everything.  But for the last week, the family care online forums have been awash in tears for a little boy with disabilities who passed away.  His name was Gavin and his mother Kate Leong, wrote about his life and passing in her blog "Chasing Rainbows".  Kate and her husband wanted Gavin to help other children, even in death, so they donated his organs.  Kate posted this message on facebook a couple of days ago.  To me, this message speaks to the bonds between professionals and family caregivers that can be forged by facing struggles together, as one.

Whenever Gavin was hospitalized - or even there for an appointment - it always felt like we were home with family. He was so loved by his doctors - and we loved them, too. I was so grateful to get this email (which I'm sharing with permission) from Gavin's Orthopedic doctor who was always amazed with his progress and determination. Thank you, Dr. Peter Gabos, for taking such good care of my son... and for comforting me with this message:
***
Dear Ms. Leong—

I was in the OR yesterday operating in the room right next to Gavin’s. You can imagine my shock and profound sadness when I learned he was in fact the child undergoing organ harvest. We stopped our case in a moment of absolute silence for him. I am so profoundly saddened by your loss. The world has truly lost one of its most courageous beings. The example of care and unconditional love that infused through you to him will stay with me forever. I am so blessed to have been touched by the both of you.

My prayers and thoughts are with you, Ed, and the rest of your family and circle of friends. Most humbly yours,

Peter

Peter Gabos, MD
Alfred I. DuPont Hospital for Children