When someone close to me is in hospital, I practically move into the room with them (with their permission). I do the practical things (getting a warm blanket or a cold drink, opening and closing drapes, adjusting the bed, waiting outside the shower door). I also do the advocate things. I ask questions they might not think about, or mention symptoms, other medication they are on, family history - or what bring up something the specialist said. And I make demands.

Perhaps from watching me in action, both for him and for Seelergirl, Seelerman has gone from being completely passive and intimidated by the medical system to speaking up occasionally. When I saw the specialist about my Parkinsons, he agreed to come into the room rather than sitting in the waiting room. He heard everything the specialist said, and better understands what I'm experiencing.  I may need more help and intervention from him in the future. 

Oh wow. I could talk for ages on this thread!

With Matthew I move in and become his voice because he is non-verbal.  As someone who HATES conflict and strives to build constructive relationships I had to come to terms with the fact that sometimes, in these situations, I am not going to be liked and I may need to pull out Fang (the don't f*ck with me and my kid mother bear).  I strive to keep Fang in her cage but she has broken loose a few times over the last 13 years.

Like the time I told the hospital that their beds were not able to maintain a child with Matthew's level of complexity safely.  Children (and adults) with profound physical and developmental delays needs safety beds. You'd think a Children's Hospital would know that and would have the appropriate equipment.  Nope.  They refused to listen and made me feel like a difficult, cranky parent to boot.  One night, while I had escaped to sleep for a few hours a nurse walked in to Matthew's room at 3am and found him on the floor.  He had fallen out of bed. There was hell to pay then.  They were ordering beds before Matthew was discharged. 

The cancer clinic here is excellent. They encouraged me to bring family, friends etc. - anyone who wanted to be a pair of ears for me.

Everything was my descision ( needed the support) and the Cancer staff supported what ever descion I made.

My mom used to be a good advocate when I was younger - sometimes.  Recently, I had to ask her about things from when I was very little and she didn't know.  The medical system was different back then, and I think she was also a little overwhelmed when her first child had medical problems when my dad couldn't always be around because of work.  She's gotten better since then.

Now, I tend to be the advocate for myself.  I have brought my husband to an appointment before.  It was more for support when I was unsure how bad the news would be.  Having a second set of ears is also helpful, but there are ears I would rather have than his as my backup.

I've never had to be an advocate for anyone else, yet.

One thing that helps when seeing a new doctor is to have printed lists of symptoms, medications, etc.  If you bring a handwritten list, they usually want you to rewrite it on a form.  If you have a printed one, most places will take it and it can save quite a bit of time.  They are also helpful as you only need slight edits rather than starting from the beginning for another doctor.  It wasn't too long ago I had a meet and great where I was rushed just giving my history as well as family history.  At the time it didn't occur to me to book a longer appointment, now I know to do that as well; but the printouts at least saved some time!

I have advocated for a family member through a very distressing period.  One of the many problems with the medical world that I rapidly noticed was the tendency for each specialty to act independently, instead of consistently and co-operativley treating the whole patient.  When a patient has a variety of difficulties sometimes one department works against the efforts of another because they have different goals and priorities. 

It is difficult and stressful to speak up when you see something puzzling (or unhelpful).  'Experts' sometimes get defensive when asked for their reasoning behind a decision - or lack of a decision.  Routines and rules get set up in order to make it easy for the staff not the patients.  

Advocates are essential for patient well being - and I am aware that there is no one in my life who would advocate for me during a medical crisis.

Kay...did I read that correctly that you believe noone would advocate for you?  I sure hope that is not true.

I moved into dad's hospital room for the last month of his life.  He was skin and bones and had a gtube as there was nothing left of his stomach...but his heart just kept on ticking.

There were many incidences where I, too, took immoveable stands against ridiculous ideas.  I actually blocked the doorway so his bed could not be wheeled down to X-Ray to see what condition his stomach was in.  He was dying, pieces of flesh were being expelled, and it was a painful experience to be moved.  They were not pleased, but they complied. 

I spoke directly to pharmacy about his level of pain medication and there was no love lost toward me about that either.  Oh well...he had been on pain meds for 5 years and orchestrating between nurses and 3 doctors meant he suffered for hours.  He didn't spend a moment alone...and that is as it should be, imo.

For years I went to every doctors appointment musicdad went to. Both his family doctor and himself insisted on it. It was essential that I be there because musicdad was in such pain that he couldn' remember what he had been told. every one of the specialists was very happy to have me there. i was never excluded.

I definely asked questions and expressed my opinion of what was going on. My concerns were listened to and in some cases treatment was changed.

You read my words correctly abpenny.  My partner isn't the type of person who speaks up to 'authority figures' - neither does my partner think quickly in emergencies.  When told something I almost always ask questions to help myself understand better - my partner never does.  My adult kids live elsewhere, or are too busy to give time to parents - we each have chronic and worsening health concerns that the kids never bring up in conversation.  One seems to think that if we bring up a health problem we are 'negative whiners'.   That isn't looking like it will improve over the future years. 

Sorry to hear that, Kay.......

Having an advocate can be crucial, particularly in regard to serious injury or illness - but one may not be available.

As you point out, spouses can often be people who don't -or can't - speak up.

I have a sister with a benign brain tumour. Her husband, who is partially deaf, accompanies her when she visits her neurologist. It frustrates her that he, like her, doesn't  "speak-up".

She rings me after each visit - can only provide minimum details - and is unsettled because she has gaps in her information.

As she's my sister, I worry about it all. Each time I offer to go with her to her next appointment - but she naturally prefers her husband to accompany her. This I can understand, as the emotional bond is stronger.

(We're close, but I always preferred my husband to accompany me - so I can see why she feels the same.)

There are also many others who live alone - and having an advocate can be a problem.

Many folks live isolated lives, and don't have anyone "close" in their lives.

Others, like me, have sisters and close friends -but are unsure of who to ask. (I would prefer my step-daughter who is a doctor, but as she lives interstate and leads a busy life, I don't think I could ask her -even if it was life-threatening.) 

Another issue is that there are those, like me, who can speak up and advocate for another - but I have discovered that when my own health is threatened seriously - I tend, through anxiety, to catch little of what is said to me..........

But, one thing I do know - is that when it particularly comes to serious illness or injury, we all need an advocate.

I know my husband appreciated me in his final illness - and I appreciated his advocacy for me when I had a compound fracture of my leg and couldn't walk without pain for two years. This normally reticent man wasn't happy with the ex-rays giving the complete picture and insisted that I get a bone scan. The surgeon refused -saying it wasn't necessary - and I then asked to be referred to another surgeon for a second opinion. The bone scan revealed that healing hadn't occurred fully....... John was so annoyed he took the bone scan results to the original surgeon and said, "Now do you think my wife can resume playing tennis?" (the ex-rays were take in just two positions, and, as my husband was an engineer, he had the theory that they mightn't be telling the full story.)

Also, John observed that when I walked I limped because of the pain. We had been told that exercise would help rebuild the bone. He came up with this idea of me exercising in the kid's pool at our local swimming centre - the water would mean I could put weight on the leg without it hurting. I got a book out of the library and, for the first time in my life, I learnt to walk "properly" -ensuring that the damaged bone was given the opportunity to heal.

Needless to say, these days, I enjoy every step I take, and thank John for his advocacy........

Like Kay and Pilgrim, I feel that I need to be my own advocate.  Seelerman is shy, and quite easily intimidated by the medical people (and educated people in general).  But, watching me in action, and maturing, he has learned a lot.  Seelergirl would make a great advocate, but she has too much on her plate right now.  So mainly, I feel I am on my own - but I am gradually telling Seelerman what I need.

The problem in being your own advocate is that when you need it the most, you are apt to be the most helpless - too tired,  too sick, or too doped to notice what is going on, or to speak up.  Or you may be in a position where you simply can't speak.  This may be where some of the anger and 'acting out' that is sometimes seen in nursing homes comes from.  Imagine being helpless in bed, needing to use the commode, and being ignored until you soil your bed - imagine then flinging your feces at the first person who approaches.  I don't ever want to go into a nursing home - as good as some might be. 

Meanwhile I will continue to advocate for my people. 

(1)   I got Seelergirl admitted to hospital when I insisted that she needed fluids by IV and care that I couldn't give her, when the doctor was about to send her home from an office call with antibiotics.  Doctor:  "Do you think she needs it?"   Me:  "Yes."  Doctor "Then I'll call over and arrange for a bed."

(2)  After Seelergirl was in labour for 24 hours, I noticed signs I didn't like.  I went to the nursing station and told them  "It's time to get that baby out."  The nurse told me that they were monitoring the situation, and I should 'calm down and go for a coffee'.  I went down the hall, and when I returned minutes later they were prepping for a C-section.

(3)  Seelergirl is lying on the chesterfield at home, sick from crohns.  Baby in crib in next room.  Husband with older child at the movies.  Seelergirl insists she is ok.  Suddenly she gets up and staggers to the bathroom, holding on to the walls to keep from falling.  When she comes out I've arranged.  Seelerman stays with baby. I drive Seelergirl to hospital.  When Husband gets home, he can take over with the baby and Seelerman can make his own way to the hospital and meet me there.  She meekly does as she is told and is shortly admitted to hospital.  She didn't have to make the decision or the arrangements.

(4)  I think I already told you that Seelergirl was admitted to hospital with radiation burns for cancer treatment two days before Christmas.  The emergency room doctor got her pain undercontrol, started antibiotics, wrote perscriptions, and told her she could go home the next day.  We picked up the prescriptions and went to pick her up.  The nurse told us Seelergirl couldn't leave because no one had been in to sign her out.  I told the nurse I had an errand to do, and when I came back "I'm talking my daughter home to be with her family for Christmas."  Nurse:  "That's the way it is, is it?"   Me:  "That's the way it is."   Before we were down the elevator we heard a doctor being paged to '3 east'.  A few minutes later, while we gassed the car, we got a phone call.  Seelergirl had been signed out.

Sometimes advocacy might take a longer,,harder fight.  Sometimes it is just being there, asking questions, making suggestions.  But, in my mind it is needed. 

Seeler,
Your daughter is very lucky to have such a mother. My mother lost interest in her children after we left home. Thank goodness I did not have health problems like Seelergirl.
.
I don't know that my grown kids would get involved either. I'm in Kay's position. My daughter is a doctor herself, so I could turn to her for advice, at least.
.
I'm close to my sister, but we live in different cities.
.
Advocating for my parents never came up. My father was thirteen years older than my mom, so she took care of him. He died suddenly of an apparent heart attack at 79. My mother lived on her own quite well for many years, then died suddenly at age 78. We never found the exact cause. We would have had to pay for an autopsy. It hardly seemed worth it by then.

Hi Seeler,

I have been a patient advocate for my son as he was manifesting a very early onset of bi-polar disorder (combined with an Autism Spectrum Disorder that was diagnosed late).

During that time it was not uncommon to lock horns with medical professionals.  Most often for their complete and utter failure to approach our son or others assisting him with anything approaching respect.

This resulted in my wife and I removing our son from the care of two physicians and beginning a disciplinary inquiry against the first of the two.  While I found the disciplinary inquiry to be completely lacking anything remotely resembling justice and made that very clear to the Hospital Board at the time my energy was needed elsewhere and the fact that this quack would be prohibitted from interacting with my son was victory enough.

At 20 years of age he is now taking charge of his own medical affairs and only at his invitation will my wife or I advocate on his behalf.  We are fortunate that the medical health professionals he deals with in Ontario demonstrate a quantifiable competency above those we dealt with in Newfoundland and Labrador.

For a short period of time I belonged to the Ethics Committee of a local hospital and that allowed me to see that there is a paucity of education given to doctors regarding pastoral ability.  Many young doctors have serious difficulty actually talking with their patients or the family of their patients in a human manner.  I suspect it is hoped that they will develop this "bedside manner" skill set through experience.  I think that hope is misplaced.

By being more knowledgable about policies and procedures used by hopitals.  That means asking questions of social workers on staff at the hospitals.  They can guide you through how things are supposed to work.  The proper channels so to speak.

When those attempting advocacy jump in and start emoting without knowing the proper channels things get very messy and it doesn't take long for adversarial relationships begin.  An adversarial relationship might not be avoidable.  One shouldn't start out expecting it or looking for it.  Such attitudes prejudice every interaction between the health care professionals and any advocate.

The best advocate is one who can be dispassionate.  The reality is yelling at a doctor rarely helps and sometimes more yelling at the patient or the family would be helpful.  Sometimes the doctors are communicating truth, they just do it in a difficult way.  Owing to a lack in pastoral ability.

Oddly I find mental health professionals among the worst medical communicators.  It may be that they spend more time cutting through crap and are conditioned to speak bluntly and directly.  Which might be just what a patient needs for one reason or another.  Family members need a bit softer edge as they wrestle with their emotional baggage.

Truth be told, I'd rather advocate with medical people than with educational administrators. 

I started disciplinary action against a doctor but I had to call in the Human rights commission for the board of Education.

I have been the parent advocate twice in the last two years for children in our community whose parents were overwhelmed by the board of education and the lack of action in addressing the special educational needs of their children.

Education Administrators do not like when parents bring an advocate (thought they all lie through their teeth and tell you that you are welcome).  They also hate when parents come to a meeting armed with their own agenda.

Sadly with the death of Lindsay Moir a while back more parents of children with special needs are going to be given the gears by their local boards of education.

Grace and peace to you.

John

Kay, that's a tough position to be in.  Do you have a solid relationship with your family Dr.?  I would make sure that he/she knew what my feelings were regarding quality vs quantity of life and that you are in a position without a strong family advocate.  A solid friend with a bit of moxy would also be helpful.  I hope that's in the cards for you.

Revjohn spoke about a lack of respect given to those that have mental ability issues rather than physical and it reminds me of my mom's comments.  She worked for many years with mentally challenged adults and she said that it was quite shocking how they and their families were spoken to by some professionals.  It was sometimes difficult to get the parents to realize that it was even happening as they had become so used to it. 

RevJohn.

I agree with your comment re: Lindsay Moir.  He was a wonderful man and his passing was a huge loss to those of us involved with spec. ed.

I also agree with your comment about spec. ed. and gear-putting.  Indeed I have seen examples in the last week.

Yes for my Mother a couple of times most recently last Fall.  Despite being a nurse she is one of the most unassertive, passive patients ever.  It was exhausting and at times I felt like a bull dog chasing down doctors and nurses and getting her the care she needed.  I don't know what it's like everywhere else but where I live paitents absolutely need someone looking out for them. 

I also advocated for my elderly grandmother when she was in hospital with a broken pelvis.  Her electrolytes went out of whack and no one was attending to her so I went and told the staff gathered at the nursing station to help her right away because she was dying.  That got her taken to ICU and she eventually recovered.