Category Archives: cancer caregiving

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Ultra Sounds Monday, October 29, 2012

Good windy morning to all of you in the Eastern part of Canada and the U.S. I hope you are all safely snuggled somewhere to weather the weather.

Today’s post is one of my own works. This poem is about the oft-overlooked caregiver of us needy patients. They give and give and give and often nobody notices.

Sam

An Ode to a Caregiver

by Samantha Albert

 

In the business of illness

the patient is the star,

with agents and  handlers,

groupies and entourages.

“Do you need some chicken soup?”

“You are so brave, so inspirational!”

“Tell me your every need, your every wish and I will fill it.”

The patient is the celebrity, the self-indulged.

They are encouraged to focus on themselves

To take care of themselves

To talk about themselves

Their jokes are funnier

Their words are more profound

Than they ever were before

But if the patient is the star

what is the caregiver?

Chief cook and bottle washer.

Launderer of dirty linen.

The one who makes the money to pay for the medication

The one who cheerfully brings endless cups of tea.

The one who explains why mama has to be away so often.

The one who responds to grumpy moods with a sympathetic, “Are you having a hard day? “

The one who is scared, but can’t show it.

The one who, no matter how much they love the patient,

is always a bit of an outsider to the illness.

The one who must carry on with the life of two,

while the patient is otherwise engaged.

Where are their groupies?

Where are the reporters?

Where is the fanfare?

Leave the patient in anonymity for a while.

Cast your spotlights

on the quiet one in the background.

Celebrate him

Appreciate his dedication

Acknowledge his courage

Recognize his love

June, 2011

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The psychology of waiting in line

The other day I had to visit the pharmacy at my hospital. A few years back they did renovations in order to serve me better. (That’s what the sign said, “We are doing renovations to serve you better”.  I assumed they meant me ).  Because it has been a while since I have used the pharmacy, I have forgotten what a black hole it is.

The people who work there all seem very nice, but there are long lines of people waiting to pay, many tired-looking people with numbers in hand waiting for the chance to drop off their prescriptions and another group waiting for their prescriptions to be filled.  You can almost see the spider webs gathering on the people in the waiting room.

There seems to be a problem with flow.  I would be bold enough to say that while the pharmacy looks a little bit prettier (as pharmacies go) their renovations did nothing to improve service and, thus, I don’t feel that I am being served any better.   Maybe the sign should have said “We are doing these renovations, so you will have the illusion that we are serving you better. “

As you can see from this and other posts I have a thing about waiting rooms and wait times and efficiency.  As a long-term patient, I must spend hundreds of hours a year just waiting.  When you spend hundreds of hours a year waiting, you notice little things like efficiency and effectiveness.  I don’t think that the solutions are about more money in the system, but rather about innovation and creativity. Hmm. Creativity…

I decided to do a little bit of searching for innovative approaches to reducing wait times in hospitals and the links at the bottom provide some case studies. Then I hit jackpot. I discovered there is a whole theory about waiting: Queuing Theory. There is actually a body of knowledge that looks at the psychology of waiting in line. Perhaps this is meant to be my chosen profession!

It seems there are six basic principles to the psychology of queuing. They don’t necessarily improve actual wait times, but can improve people’s perceptions of their wait time. Let’s see how we could use these to help the pharmacy:

1. Unoccupied time feels longer than occupied time:

“As William James, the noted philosopher observed: ‘Boredom results from being attentive to the passage of time itself.’…. Any activity provided by the service provider to ‘fill time’ should (a) offer benefit in and of itself, and (b) be related, in some way, to the following service encounter.” [1]

At our pharmacy there could be computers set up where you could type in all of your drugs and supplements to see about potential interactions, there could be educational brochures about types of drugs, there could be a “counsellor” who walks around answering questions ahead of time, thus saving time when people actually get to see the pharmacist.

2. People want to get started:

“People waiting to make their first human contact with a service provider are more impatient than those who have had some contact and some idea that they are getting started.” [2]

At our pharmacy, the first thing you meet is a machine that spews out a number. Then you have to wait for a loooong time to be called to even drop off your prescription. At the blood lab on the other side of the room, a volunteer hands out the numbers. She’s usually a grumpy volunteer, but at least she’s human and you have some sense that you have been processed. It seems simple enough to have a “greeter” who could hand out numbers and explain the process to people.

3. Anxiety makes waits seem longer:

Anything that makes people feel anxious that they may not be served or served in time adds to the perception of waiting.

At our pharmacy, you have people needing to get to doctor’s appointments, appointments for clinic or simply catch a train home. I think the answer to this is in the next point.

4. Uncertain waits seem longer than known, finite waits.

At our pharmacy, they could have an electronic average wait time to drop off a prescription and one to pick up a filled prescription at any given time of the day. Then perhaps they could have a map to nearby alternative pharmacies for those patients that do not need to have their prescriptions filled at the hospital itself. Some people could decide not to stay and others would at least know what they are facing. Perhaps they might choose to come back later in the day and see if the wait time is reduced. Across the street at Toronto General I almost never have to wait behind more than one person to get my prescriptions.  Why isn’t my hospital sending patients over there to get their prescriptions filled?

5. Unfair waits seem longer than known, finite waits.

People can become incredibly unhappy when they feel that someone is jumping the queue.

One day at the pharmacy I saw an elderly man who did not understand the process of taking a number. He kept waiting and seeing people cut in front of him to drop off their prescriptions because their number was called. He was practically apoplectic with frustration. Having a greeter to give out numbers would make the system much more transparent and clear to all.

6. The more valuable the service the longer the customer is willing to wait. 

This theory is what has led to express check-out lines in supermarkets. Those with just a few items are less willing to wait than those with a full cart.

Perhaps there could be some kind of express line for straightforward renewals and over the counter purchases. The new prescriptions and those requiring more patient/pharmacist time could be in the other line.

7. Solo waits feel longer than group waits:

“Whatever service organizations can do to promote the sense of group waiting rather than isolating each individual, will tend to increase the tolerance for waiting time” [3]

Any ideas for this one?

I took the information and all quotes about queuing theory from this article by David Maister, but there are many good articles out there.

Here are those links to some specific examples of innovative approaches to health care. Any other ideas or examples out there in the blogosphere?

http://www.shmula.com/staring-at-acoustic-ceiling-tiles/1717/

http://www.shmula.com/emergency-room-er-wait-times/1696/

http://www.chsrf.ca/SearchResultsNews/09-08-01/f501e73a-f901-4635-9bae-c62946253a98.aspx

http://www.leanadvisors.com/kila-resources/lean_healthcare_lab_processes/

http://www.leanadvisors.com/kila-resources/lean_healthcare_private_practice/

http://www.hospitalnews.com/oslers-innovative-approach-to-reducing-ed-wait-times/

http://www.chsrf.ca/PublicationsAndResources/PassItOn/ArticleView/10-02-01/423dea34-d2a9-431b-bc4c-567c72917e60.aspx

http://www.tsh.to/pages/Paedlink-eases-Emergency-waits

Sam

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Princess Margaret Vignette II

Although many people will participate in this anthology who have no connection to Princess Margaret Hospital, it is still the epicentre of the project. My intention is to occasionally celebrate something wonderful about the hospital – a vignette – to give people a taste of what an incredible place it is.  I will try not to be too sentimental, but sometimes it’s hard when it comes to the people who have helped me there. Here is this week’s vignette: Manny the Chemo Nurse

There are many wonderful nurses in the chemo unit, but my particular favorite is Manny. Manny is probably everyone’s favorite. He’s  muscular, tattooed and carries a huge smile. Everyone knows Manny. He has endless energy and you can see how hard stillness is for him.

It is like poetry in motion to watch Manny work. He never stops, his eyes watchful, planning what to do next. He is economical with his movement, no wasted energy, but precise and confident. He never fails to get the vein first time, no muss, very little pain. My visits are short and snappy with Manny. No extra rituals beyond the minimum requirements.

This efficiency of movement would have served him well in the years that he spent moonlighting as chef and bartender.  He told me he was moved from the kitchen to behind the bar because of his energy and ability to entertain the customers the same way that he now entertains the patients. He would have been great up on the stage.

It t is because of him that the television in the chemo unit plays the food network instead of the 24 hours news channel. He is funny and kind and gives a party-like feeling to the unit even as he keeps patients flowing in and out like an efficient faucet.  You never feel rushed and always feel valued. You can also see that the dynamics between nurses is more lighthearted when Manny is there. He has an effect on the entire unit.

I was about to say “If only they were all like Manny”, but maybe he is better appreciated as a unique individual. Too much energy like his might make the place explode. We will enjoy one of him all we can.

Sam

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The ripple effect

As I’ve mentioned before, we want to hear not just from cancer patients, but from other people who connect to the cancer experience. I have talked about caregivers, volunteers, doctors and nurses, but many more people have associations with cancer.

When I was undergoing my stem cell transplant, there would be a series of people who would come in to clean the room and bring me my meals (such as they were). I often wondered what it would be like to go from room to room seeing all sorts of quickly thinning and pale people attached to IV machines and losing their hair. How did they look upon the anxiety and sometimes suffering that was surely upon most of our faces?

Some that came were very quiet and did their work. Others gave me smiles and words of encouragement which touched me very much more than the dutiful clergy that came by to bring me good cheer. What did they think when they went home at night? Did they feel themselves lucky? Did they worry about us? What kind of private griefs of their own occupied their minds and made our sufferings seem insignificant? Or were they just thinking about what to make for dinner or the latest hockey game? I would like to know?

There are many others in the complex web of support that underlies the health care system who interact with patients, but are not specifically health care providers. Aside from maintenance workers and orderlies, there is the reception staff, food service staff, and morgue staff. There are the blood lab technicians, diagnostic testing technicians, pharmacy staff, and gift shop staff.

We want to hear many voices in this book and our challenge is how to reach these groups. Many of these jobs do not have online support, communication or educational networks. If you have ideas, please let us know!

Sam

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Thank goodness for the sherpas, but you still have to climb the mountain

Almost every self-help guide to coping with a cancer diagnosis recommends surrounding yourself with a good support network. Of course I couldn’t imagine how I would cope without mine. They have been extraordinarily supportive and helpful.

What no one seems to tell you, however, is that no matter how wonderful your partner/parent/child/friend is, you still need to walk that path alone. One friend described her role as being my sherpa. I still had to climb that mountain, but she could be there helping me haul my stuff and finding the paths.

There is a limit to what they can do, however. Your support person cannot be your stunt double, standing in for you when you have to walk around a crowded waiting room half-naked in one of those blue hospital gowns or when you have to undergo a painful and scary procedure. You are really in it alone.

I wonder if this is a universal feeling? What have your experiences been? What is it like to be a support person for someone who is dealing with cancer and being on the “outside”?

It would be a very interesting avenue to explore through a creative work. There are complex feelings of isolation, separateness and impatience with other people’s inability to really understand what you’re going through. There are conflicting feelings of not wanting to talk about your illness because you feel that no one else can really understand and frustration that no one is asking how you are.

I think I hear a poem coming on…..

Sam

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Hospital Volunteers

Princess Margaret Hospital has an extensive volunteer system. You see the folks in red vests bounding around the different clinics, offering juice, cookies, and, when you’re lucky, lollipops.

Yesterday I ran into Tara, one of the volunteers extraordinaire at the chemo unit after not having seen her all summer. It was as if I was greeting a long lost friend, we were so happy to reconnect and find out how the other was doing . Tara’s excitement about this project was of great encouragement.

Hospital volunteers are another piece  when it comes to putting together the entire picture of the effects of cancer. What is it like to come and try to offer cheer to people who are very sick or dying? What is it like to be rebuffed? What is it like to watch someone over the days and week  either regain their health or to deteriorate.

Volunteers are caregivers, but at a certain distance from the patient. Not family, not a paid worker, but somewhere in between. I hope that we can engage volunteers in this project to write or create something to add to our perspective.

Do you know any volunteers extraordinaire? Are you a volunteer or do you have a story about a volunteer?

Sam