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What does Patient Centered Care mean for people on a journey with cancer?

I'm starting off the New Year thinking about patient centered care. What does being "patient centered" mean to cancer patients? There is a movement within the health care industry to provide patient centered care especially in hospitals - based on research and quality standards they require this. Person centered practices are a method to achieve patient centered care in the US.

In the UK person-centered practices are being introduced in hospitals. For instance, upon admission patients are being asked "what are the three most important things"and this is recorded in the chart. Nurses and other hospital staff are developing one-page profiles to get to know co-workers, members and build a more cohesive work team around patient care.

Mapping the "what could be possible" person-centered patient's journey has also been developed in the UK.  What would this look like for people on a journey with cancer - starting at diagnosis?

In looking at the points along the journey that cause the most stress we can begin to see where person-centered practices can be used to help the person through the process.

Waiting for test results, decisions about treatment, waiting to start treatment or for surgery, can result in anxiety, stress and frustration for the patient. www.thinkaboutyourlife.org provides ways for people to process through these times.

What if patients didn't have to do this on their own? Doctors and nurses could help patients know what to expect and help them think about ways to cope. Or link them with "navigators" that have information on resources (i.e. wigs, financial aid) and could help them develop the skills they need to cope. Using good day/bad day is a way to intentionally create good days while dealing with the unknowns of the cancer diagnosis. This gives patients a sense of control which studies have shown leads to better health outcomes.

Continuing to think about how to incorporate person-centered practices and looking for ways to partner with the medical community! Interested…leave a comment.

One More Finish Line!

AUG 12

This weekend was the Susan G. Komen Race for the Cure.  What do finish lines mean when you are on a journey with cancer? I have almost "finished" 11 years as a survivor and I am grateful. During my 5K walk I had a chance to reflect on "finish" lines…

With cancer, finish lines are not the end of the race but the starting point for the next part of your journey - a beginning.  It seems every "finish" and celebration is quickly followed by the question of "now what?"

With each milestone you reach on the journey with cancer, you add to your collection of "finishes".  It is nice to reflect on the finishes from time to time. Smile, celebrate, and love life.

There are many finish lines on a journey with cancer - finishing treatment, yearly milestones of surviving, forgetting to think about cancer for a day…

Some finish lines are elusive; striving to keep our bodies healthy to prevent a recurrence or to keep a recurrence at bay - you never reach the finish line; just keep moving towards it.

Some finish lines on the cancer journey are anticlimactic.  They are a letdown compared to what you were expecting.  Treatment is over…I expected "YIPPEE!!!!! Party down!" Reality was "yippee. I am so tired, bald, fat and did I mention tired?"

The finish line that I most crave is to live to see my son grow up.

It is different for all of us. What are your thoughts on "finish lines" and your journey with cancer?

Using Person Centered Practices in the Healthcare System

As I have done more work with the website it is clear how important it is for person centered practices to be used within the healthcare system. As a patient, I bring my one page profile with me to doctor appointments.  It helps me prepare for the appointment.  The doctor may look at it briefly and say how pretty it is or what a great idea.  And that is the extent.  This is okay.  It really is for me.  As a patient I can impact my interactions with my doctor. What would be fantastic is to see the healthcare system as a whole, embrace person centered practices and learn more about patients that would translate into better health outcomes.

Looks like some progress - The other day I was searching the internet for health websites to explore the ways the health industry is implementing person centered practices in patient care. I was thrilled to discover a website, as well as a guide, that focuses on the improvement of patient-centered care (click on the picture to access the guide).  Here is a link to the website:  http://www.patient-centeredcare.org/inside/abouttheguide.htmlJuly 12-1

The guide, as well as the website, provides examples of good person centered practices. One organization called Alegent Health Lakeside Hospital, is using a version of a One Page Profile called My Story poster. http://www.patient-centeredcare.org/chapters/chapter7b_Tool_B.pdf.July 12-2

Northern Westchester Hospital encourages patients to request their preferences so that they can be more person centered with them during their stay in hospital. What a great example of being proactive in finding out what matters most to people and making efforts to honor their rituals. Something that is most essential when we are not feeling well.

 

 

 

Wellness and Survivorship

Wellness and Survivorship

This year has been challenging health wise! Thankfully I am on my way to 11 years as a breast cancer survivor!! However, my neck surgery to repair a ruptured disc was not in my Wellness plan.

Now that I have recovered for a few months, I see my strength coming back and have more energy.  Also, I find myself with less and less time for ME.  Over the past two weeks I have had 30 minutes every day to myself other than sleeping. I need more. I repeat the mantra of "it's okay to take care of me"! Yet I haven't acted on it. Right now I am in my office on a Saturday. I have found 30 minutes to work and think about my health. I exhaled a deep breath and started on my 4+1?'s to find one small action to improve my physical health.  I spent 10 minutes on my 4+1 questions and arrived at a next step.  See it below. I realized I can get up at 6am (just 30 minutes earlier) and get some exercise, meditate and then make my coffee and start my "getting ready for work routine"!   My five year old usually sleeps until 7:15 am. YEAH! What relief I feel.  AND it only took 10 minutes of focused thinking time to come up with a solution that feels "doable".June 12

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Social Support

I've been gathering information for a health grant that is starting in July of this year and ran across the four areas of social support.  As I have learned more about these four areas, I see how important they are in supporting people on a journey with cancer or a chronic/long term condition.

As I near my 11 year survival anniversary, it seems I am more and more in the role of supporting others with cancer or a long term condition.  Even though I am a survivor I struggle with knowing the best way to offer help.  I believe the four areas of social support below are all necessary types of support for people along their journey with cancer or chronic/long term condition.  I am thrilled to see the connections to the tools we offer on www.thinkaboutyourlife.org. I've described each type of support and included the tools that will help achieve this support. It helps me know where to start!

Emotional Support: This type of support often involves physical comfort such as hugs or pats on the back, as well as listening. With emotional support, a friend or spouse might give a big hug and listen to hopes and fears about cancer or the impact of the health concern. Those that have had the same experience can empathize; letting you know that they've felt the same way, too. The simple act of being listened to lets you know others care. This offers comfort and the opportunity to process thoughts and feelings to hopefully get your bearings as you move forward on your journey.

Hopes and Fears and Good Day/Bad Day are helpful start the conversations/listening opportunities to provide emotional support.

Esteem Support: This type of social support is shown in expressions of confidence or encouragement. Someone offering esteem support might point out the strengths you're forgetting you have, or just let you know that they believe in you. This often leads to you believing in yourself more. This can be helpful when you are making decisions.  By having more confidence you feel more positive control in your decisions and in coping with treatments which has been shown to lead to more positive outcomes.

Gifts and Capacities and sharing what you like and admire about the person that has been diagnosed with cancer or long term health condition (part of the One Page Profile). You could send a card that captures the person's gifts and talents.  This could help build them up to deal with their illness and remind them of their strengths!

Informational Support: Those offering informational support do so in the form of advice-giving, or in gathering and sharing information. It is interesting to note that only one form of social support provides information or advice.  You may be overwhelmed with the amount of information and advice given to you (without asking) when you are diagnosed with cancer or a long term condition. This is the kind of support most frequently received from our doctors. You may enlist others to help you out as well - especially others with the same diagnosis as you.

What is Working and Not Working and the Decision Making Agreement can structure conversations to be empowering for the person and give you specific information about what advice or information is needed.

Tangible Support: Tangible support includes taking on responsibilities for someone else so they can deal with managing their illness. This type of support is about taking action to help; for example by bringing dinner, helping to brainstorm solutions and help with issues that arise on the journey with cancer or long term condition.

Good Support for Health

Matching Support

Good Day/Bad Day

One Page Profile

 

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My Survivorship Plan

Survivorship w/b

In February, I developed the Think About Your Life Survivorship Plan but didn't get a chance to use it before I ended up having surgery for an entirely non-cancer related health problem - pinched nerve.  My doctor said I will be healing for at least 60 days from my neck surgery.  As I developed my Survivorship Plan, I realized just how closely connected my pinched nerve is to my journey with cancer.

As part of the Survivorship Plan I looked at what is working/not working with the 5 Ways to Wellbeing in my life.

 

5 Ways to Wellbeing includes the following categories:

  • Connect
  • Be Active
  • Take Notice
  • Keep Learning
  • Give

Before surgery, I had stopped any kind of exercise - even walking around my neighborhood. My time was consumed with physical therapy and pain management. My version of pain management was avoiding anything that hurt - which sounds simple.  Actually, I didn't do anything really but sit in a comfy chair with an ice pack and take a muscle relaxer.  Inactivity leads to weight gain, loss of fitness, stress…all which are on the no-no list if you are trying to avoid a recurrence of cancer. This causes worry, fear and self-destructive thinking.

Now that I've had surgery, I find myself exhausted after a full day of work and just avoid exercise. Of course I know mild exercise can increase energy - but I haven't started.  It is time to do something, but what?

When I looked at all I wrote for working/not working under the 5 Ways to Wellbeing, I came up with this summary, "I need to heal from my neck injury to improve my quality of life and to prevent a cancer recurrence."  My energies need to be focused around recovery from surgery by building time into my schedule for gentle exercise (be active), meditation (keep learning and take notice), and building my relationships (connect). Taking my time to heal and improve my health needs to be the focus.

I just had lunch with a friend who has lupus.  She runs 5K's and the occasional marathon.  When I was marveling at her ability to do long distance running and complaining about my injuries and not being able to exercise, being exhausted etc…she just calmly said - "I tell people all the time that running is just putting one foot in front of the other." For me that captured my problem. I overwhelmed myself. My expectation was after surgery I would bounce back from my neck injury and ultimately be in "perfect" shape.  This expectation is neither achievable nor healthy. I haven't been in "perfect shape" ever. So, taking advice from my friend…I just need to put one foot in front of the other and find small successes with healing.

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Using person-centred thinking tools after surgery

As you will know from my previous blogs, I have been struggling with severe neck and arm pain. I thought it was almost resolved and that I was on the road to recovery. A couple weeks ago I found myself in the emergency room with severe pain. I ended up with neck surgery to repair a herniated disc that was pinching a nerve and causing shooting pain down my right arm. I cannot work for at least a month and that's very difficult for me.

While I'm off work I want to be intentional about how I spend this time. I can see how easy it would be to become depressed about not being able to do the most basic things that I am used to doing. I am a reformed workaholic however I still have those tendencies. So while I am off work, I have been using Dragon dictation, which allows me to speak and turn my words into typing. I am journaling my thoughts, feelings and ideas that I have every day while I'm on medical leave. It's important to me to practice what I preach while I'm in the midst of a difficult situation.

I've been using the good day/bad day and the hopes and fears tools often, as I think through how my days are going. On the good days, since my surgery 10 days ago, I have found the opportunity to go outside and sit on my deck. I enjoy listening to the birds chirping and watching the grass green up, since we're so close to spring. Also, I am spending more time with my mom. This has been a great opportunity for us to strengthen our relationship. This is the first time since I was in preschool where we have had time to just hang out.

On bad days I'm stuck inside all day because it's raining. Also on bad days, I start to ponder the future. I wonder what it means to be 41 years old and to have had breast cancer when I was 30 and now to have serious neck/nerve problems. I get worried.

As a result of my surgery, I'm using every hour I have of vacation time and sick leave. This is causing our family to have to experience a "no vacation year". While this sounds kind of frivolous, it is going to be a test for our family. Vacations are really important to us and this will likely be the first year we won't take a big vacation somewhere. It's not just me who's experiencing difficulties with time off in surgery. I am putting my family through a tough time. My husband is my caretaker, in addition to having to be a Dad and work full time.

After I consider the good and the bad days, I like to come up with an action that will help me resolve some of the concerns I have about bad days or for something that will make good day's more frequent. All I can do today is think about what I can do to get stronger. I need to minimize the time off and the impact it has on me and my family. What that means is I have to be a good patient. I have to not reach, not lift and focus on things that will help me heal and recover. I can get stuck in thinking about what I can't do. Rather I will focus on what I can do.

Survivorship Planning

In 2008 I had my first meeting with the breast cancer survivorship specialist. I thought it was a big deal to get switched from the cancer clinic to the Survivorship Clinic and immediately started planning how I would celebrate yet one more milestone in my cancer journey!You can never celebrate too much - fun is always important to me.

Anyway, the meeting with my survivorship specialist was informative and a bit of a downer. We discussed the possible long term side effects of my chemo, radiation and hormonal therapy treatments. Now that I had survived cancer, I had to deal with life long side effects or the possibility of problems with my heart, bones, and immune system, not to mention the increased risk of developing a second cancer. Hmmm, how to celebrate this??

Feb 2012Well, I began to think of how person centered tools would enhance the survivorship planning. I wanted to talk about my hopes and dreams for the future which included helping women experiencing breast cancer. I had the passion to support women and let them know they were not alone in their experiences. This expanded to realizing there are consistent experiences with most people on a journey with cancer. This is what led to the different stages of the journey found on the website:

Discovery - you think you might have cancer

Diagnosis - you hear the words "you have cancer"

Treatment - having some sort of treatment gives hope for cure or prolonging quality of life and treatment does disrupt life.

New Normal - treatment is over…NOW WHAT - this is where survivorship planning comes in to play. Cancer specialists talk about medical issues in survivorship plans.  We have developed an extra component to survivorship plans - the YOU part. I want to be happy and healthy and feel empowered as I continue to survive cancer. I still need support, but it is different now - I need help to keep my stress level LOW and to take time for myself. This is what I want in a survivorship plan. We hope it is helpful to others at this stage of their journey with cancer.

Click here to download the survivorship plan developed by cancer survivors based on 5 Ways to Wellbeing and person centered support.  

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The Healing Process and What If’s Plan

My last blog was about coping with severe pain and trying to advocate for myself. Now that the pain has lessened I am grateful to be healing. I believe there is a day soon where I will be back to regular life, I hope!

I know I am lucky that my pain is responding to treatment.

I had and still have moments of fear about the long term impact of my neck. A month ago I was afraid that every day would involve pain and limited mobility.  Everything seemed to make it worse: helping my son take a bath, driving, making coffee, typing, brushing my teeth. I couldn't do my share of the work around the house and couldn't care for Ben alone in the evening and morning. I started seeing my sick time at work dwindle. What would happen if I ran out of paid time off?  These thoughts and realities caused me to panic, get a tight chest, and have a stomach ache.

I still have moments of fear about the long term impact of my neck problems. When I have days of increased pain, I can feel the panic starting.  The way I help myself tamp down the panic is having a plan for the "what ifs". It is a contingency plan directly related to my fears.

I started thinking about what I could do to earn money that didn't involve lots of typing, driving, lifting or sitting?  I listed out all the people I know and put them into categories of work, friends, family, and people I access for services - stylist, doctors etc.... What connections might they have? Can my mom come over when I need help with Ben? Do I have friends that could help or that have teenagers looking for baby-sitting opportunities?

My Friends

My Family

Colleagues

Paid services (hair stylist etc.)

Sheri

Deb

Helen

Julie

Ellen

Tanya

Amanda

Steve

Mom and Dad

Aunt Lisa/Uncle Dave

Alex

Terry and Brian

Aniko

Kathy S.

Kathy M.

Amanda S.

Teresa

 

Janelle

Kari

Stephanie/Mackenzie (PT therapists)

Dr. Swords

 

 

What was really helpful was listing out my most important relationships.  It was a good reminder about the friends and family I don't see every day.  I realized there were a lot of people I haven't talked to in a year or more; I still consider them close friends.  This prompted me to consider how to stay better connected to people.

On days when I feel fine, no tingling, numbness, or pain, I feel silly for panicking and spending time on my contingency plans. Yet, I gained so much comfort in mapping out my relationships - there are people who could help. The "what ifs" are covered or at least I have a plan.

I have embraced the power of twitter! We are posting regularly - follow us at: http://twitter.com/#!/thnkabtyourlife .

Finding hope during chronic pain

For the last three weeks arm pain has been a constant companion. It seems from my MRI I have some discs pushing on nerves in my neck that makes my arm hurt. The pain ranges from irritating to making it impossible to think about anything else but PAIN. Of course I started using our tools on the website once I realized the pain wasn't going away anytime soon.

I am determined to be an empowered patient. I expect to work in partnership with my doctors. Well, I have learned yet again, that this isn't the perspective of some physicians. My primary care doctor is marvelous and she is my "safe haven" - she listens, she "gets it" and acts on what I tell her. We develop a plan together.

Dec 11A couple weeks ago, I wrote up some notes to share with my pain management doctor about my pain, and used the hopes and fears tool. I was struggling to work full days and also have some energy left for my family in the evenings and mornings. I can sit at a computer for five minutes before my arm is pulsing in pain. Once it flares, it doesn't stop for hours - this is exhausting, depressing, makes me feel powerless…you know all that stuff!!

I asked for 1) tips to cope with pain, 2) asked about working 6 hours a day to have a little down time to recover and 3) if there was anything I could be doing to minimize the pain. Take into consideration, I am asking her these questions in a pain level of 8, doing deep breathing just to cope and think. I was surprised at her responses.

Her responses to questions:

1)   Tips to cope = "Maybe you need a referral for neurosurgeon if my treatments aren't helping."

2)   Working less than 8 hours = "You will get frozen shoulder or do more harm than good. I will not consider this as an option for you."

3)   What I can do to help myself(i.e. is there a way I can hold my body just right to stop the pain) = "Yes there is. We will get you signed up for physical therapy in a week or so."

I am certain my pain management doctor cares about people. However, I was shocked, hurt and even angered by her responses. After we meet, then it is time for my procedure, where she sticks a needle in my spine to help relieve pain. So, I wasn't eager to question her responses; I felt vulnerable.

This is not rational thinking on my part; it is survival thinking. I went to fight or flight in my mind. I heard her say she didn't really believe I was in pain or that the pain would have any impact on my quality of life that would require immediate answers.  I heard her blame me for not being strong enough to cope.

I am thankful that after my procedure in the recovery area, Rebecca, a nurse came and sat down next to me. She reviewed the page of information I had brought to my appointment and went through each point with me and offered understanding and support. Even though I was shaking with pain and anger, this helped. She gave me good support. She validated me as someone doing their best to cope with pain even though there are no "quick fixes" for chronic pain. I left the office with hope - which was all I was looking for.

I have embraced the power of twitter! We are posting regularly - follow us at: http://twitter.com/#!/thnkabtyourlife .