It’s good to have a plan…

If you are a patient with a chronic or life threatening disease, to the extent you can, you need to be actively engaged in your healthcare decisions. And that’s great, as long as you have the stamina and voice to speak for yourself. So what happens when you really can’t care for yourself? Or when all of the information and decisions become overwhelming for your primary caregiver? Earlier this year, I attended a one day conference in San Francisco. The topic: learning to be a better patient, to be your own health care advocate.  Adriana Boden, a former colleague and Julia Hallisy, a Bay Area Dentist, pulled together an amazing group of patients and professionals for a day of straight talk. The event has grown into the Empowered Patient Coalition, a non-profit group created by patient advocates devoted to helping the public improve the quality and the safety of their health care.

Joanna Smith, LCSW, MPH is a professional Healthcare Advocate and the founder of Healthcare Liaison, Inc.  She is just one of the many caring people I met at the conference. What exactly is a Healthcare Advocate? “Health advocates are professionals who specialize in helping individuals navigate the healthcare maze to ensure they get the help they need, when they need it, and in the most appropriate setting. This specialized profession has grown in recent years, reflecting its recognition as an effective resource for dealing with the growing complexity of our health care system, and its value to individuals and families of all ages. There is a broad spectrum of health care advocacy firms ranging from large national organizations providing concierge services and relying heavily on telephonic consultation – to smaller local or regional firms like Healthcare Liaison that emphasize in-person assistance. The key is working with an advocate with whom you feel comfortable.”

 

Cleaning out some files the other day, I rediscovered Joanna’s handouts and asked if I might reprint them for my readers. I am grateful for her permission to share:

When You Don’t Know What to Do: Ten Tips to Guide You with Your Healthcare

 

What happens when you receive healthcare information that overwhelms you? It can be about unexpected test results or the need for surgery. It might be for you, your partner, spouse, child or parent. Maybe you heard it while you were at the doctor’s office, at work or at home; you didn’t know what to d do next, and you weren’t sure how to approach it. You want to figure things out, but how?
In a crisis, everyone needs ways to “re-group”. Here are Ten Tips that can help:

1. Take a deep breath before you do anything – including going to the internet! There is a lot of information out there; make sure you go to reliable, impartial sources.
2. Don’t hesitate to ask questions. It is normal to only hear bits and pieces of stressful information. You need to keep gathering information until you are sure you’ve understood it all.
3. Bring a family member or friend with you to future medical appointments and have them take notes. What you miss hearing, they’ll remember for you.
4. Don’t try to “go it alone.” Decide who your support system is and use it! People with the most extensive support systems manage stressful situations the best.
5. Make sure you know the potential risks and benefits of any step you’re considering, and take all the time you need to understand them. Everything in healthcare has a possible “plus” and a possible “minus”.
6. Look at how you’ve managed uncertainty in your life before. Some people like to make lists of what their options are and then order it by preference. It’s a good technique to help you gain control over the situation.
7. If you’re overwhelmed by a decision to be made, break it down into smaller decisions. For example, the question of whether you want to try an experimental drug becomes “I’ll try it for “x” number of weeks and then decide if I want to continue.”
8. Get a second opinion. Insurance companies are generally willing to have you go for a second opinion before you make a major healthcare decision.
9. Realize that many insurance benefits have some negotiating room build into them. If you make a treatment decision and your insurer says it doesn’t cover it, ask to talk with a case manager at the insurance company about your specific situation.
10. Make sure you feel comfortable with your healthcare provider. If not, talk with friends, co-workers and other medical professionals about referrals.

Finally, stay open to new treatment options; in the future you could make a different decision. Medical systems are complex, and constantly changing. Give yourself time to explore the options before you make a decision, and know that you can change your mind.

 

(© 2009 Healthcare Liaison, Inc. All Rights Reserved)

The bottom line is we must each be responsible for our own health. We must ask the questions, do the research and become active partners in all decisions regarding our healthcare. And when we can’t speak for ourselves….It’s good to have a plan B!

Angels Among Us...continued

So…hospice is a little tricky, psychologically. Timing is everything! When you turn to hospice, you are admitting that the end of your physical life is somewhat imminent and that you do not want to take any extraordinary measures to extend it. You are going to die. Soon. And you are ok (more or less) with the next steps. Not a decision to be considered lightly!

Bill and I were clear with each other that we weren’t ready to give up hope. But, to “understand our options”, we filled our hospice prescription about a month later. As we suspected, we were a bit premature. But, it turns out, there is a step you can take that extends some, but not all of the benefits of hospice. It’s called Palliative Care – think hospice lite. Our experience was brief but positive. I would highly recommend that anyone facing a potentially life threatening illness investigate the services offered by palliative care practitioners in your community.

Our stay in palliative care lasted about a month…until our next clinic visit. By then it was clear that Bill’s ALS had a plan of its own and didn’t really care about our need to get comfortable with the stages of the disease. The palliative care nurse recommended that we contact hospice. It turned out to be the best decision of our lives.

Because it’s scary to admit that death is inevitable, and potentially close at hand, it’s hard to bring hospice into the picture. Typically, the hospice team is brought in during the last stages of the patient’s life, allowing them to die outside of the clinical environment of a hospital, affording comfort and dignity. We filled our prescription and received a perspective on what hospice COULD be.

If the hospice caregivers are brought into the family early on, they have a chance to get to know the patient, the family and gently walk everyone through the process. Not that their job is especially fun, but it isn’t meaningful for them if they are just around to help medicate a patient. They will do it, but optimally, there are lots of resources available which can make the journey much easier for the patient and for the primary caregivers. For example,

• Chaplains can address spiritual needs.
• Social workers can bring in community resources.
• Nurses and medical professionals can baseline vitals and have the difficult end of life discussions at a pace that seems comfortable and respectful.
  

And so it was with us. A care team was assigned to us. Jolene was the case nurse and a perfect fit for Bill. She respected him, listened to his wishes, was his advocate when I disagreed with a particular course of action and in general got to know him as a whole person. Not just a patient with symptoms to be managed. I loved her, because I could use her as an ally as needed! Jolene handled any major medical issues and made sure I was trained to handle the day to day issues. In the early days, a team of aides came twice a week to help with bathing and personal care. As we progressed, they came more often, giving me an hour of respite and Bill a clean shave and a smiling disposition. Showers will do that! Emmy was always his favorite. Hospice programs vary, so do your homework to find a good fit. I know of an ALS patient and his wife who received regular massages in their home as part of their hospice services!

I’m not certain why someone chooses to pursue a career in hospice. It may be that hospice chooses them. No matter! I am eternally grateful for these special angels among us. Thanks to them, the passage from this life is easier, and the resulting “good death” can indeed be celebrated.

Angels Among Us

When we are born, we come into the world amid much celebration and joy. When we die, why isn’t it the same?


Full disclosure at the beginning. Some of you may find the next few posts uncomfortable to read, because we don’t generally discuss death and dying in this culture. I hope you will stay with me as I share part of my personal story and thoughts on a model for a good death as I recognize the many angels who have chosen a career in hospice, during National Hospice month.


In my lifetime, pets, grandparents, friends, in-laws, my dad and my husband have died. For my dad and my brother in law, a gunshot wound and a motorcycle accident ended their lives almost instantly, mercifully. For those of us left behind, the process of processing their death was painful. We have all been very philosophical, saying “at least he didn’t suffer”.  But it still hurts some 20+ years later when I want to run something by my dad and have to grapple with the quantum physics/time-space continuum involved in that conversation. Needless to say, I’m snapped quickly back to the present moment! We have the conversation; I just have to listen a little more closely for the answer!


Since pets have chronologically shorter lifespan, we are generally prepared for them to die in our lifetime. I completely agree that the grieving process is intense, but philosophically, humans tend to be more prepared for a pet death. For my pets, I have been grateful for the caring counsel of a marvelous team of veterinarians!


For everyone else I’ve lost, hospice staff and volunteers have often been involved, at least to some degree. In the cases where hospice was involved, they were generally brought in at the last few days/weeks of life, primarily to help manage pain and offer some comfort to the survivors. And I will never be able to sufficiently express my gratitude for their marvelous work!


When we received Bill’s ALS diagnosis, we did a lot of soul searching. We suddenly found ourselves facing a lot of questions about death and dying. And….facing a question neither of us planned to discuss at only 23 years into our relationship. I’m not sure when we planned to have the conversation exactly, but I promise you, it wasn’t then! And from a now experienced vantage point, questions like “How do you feel about death?”, “What is quality of life for you?”, “Do you want to be buried or cremated or something else?”, “ What kind of funeral would you like to have?” need to be brought up sooner than later. Yikes!


As I write, I am so grateful for the counsel of Dr. Will North, one of the finest human beings I have ever met, and a darned good neurologist! During one of our early visits, with Will, Bill needed to know the particulars of what the last few hours and minutes of his life might be like. Not an especially surprising curiosity from a guy who had spent a most of his career in rescue situations and had seen his share of death. Me….I started to squirm and look for the exit route, knowing full well there is no escape, either from ALS or this particular conversation. Damn!


With his characteristic candor and amazing bedside manner, Dr. North walked us through what the final days and hours would likely bring for Bill. Turns out that the ONLY kind thing about ALS is that in most cases, it allows the patient a very peaceful passing and I can report that is what happened for us. Once Dr. North had satisfied all of Bill’s technical questions, he broached the subject of hospice and wrote out a prescription, with the understanding that we could “fill” it whenever we were ready. I remember our walk back to the car and ride home as exceptionally quiet as we each processed this new information.


I don’t remember who finally broke the silence but it was as if each of us was waiting for the other and finally couldn’t stand it anymore! We agreed that we were too early for hospice – Bill was still walking at this point – but we agreed that when the time came, we wanted hospice involved.


To be continued….

The Oyster and the Pearl

by: Janey Frazier

Saturday I will say goodbye to my left breast. It’s only been three weeks since my breast cancer diagnosis, yet the “before” time seems a world away. I’ve gone through the expected emotions – fear, grief, acceptance, more fear, more grief, and so on. But in some ways it has been a good time – I did not know I had such supportive friends and family members. They have rallied around me in every possible way. And my husband has confirmed that he is, in fact, the incredibly strong, courageous, loving man I married – we are tackling this challenge as a team.



I have always had a strong faith at the center of my life. I don’t attend Jewish, Muslim, Christian, Buddhist, etc. services, but I have an unshakable belief in a higher power. And I have always believed that the real me is not the body that perishes at the end of this life. I may not know how it works, but I believe that we continue on after this life has ended.


So that brings me back to my breast. It’s been a good breast and I will grieve its loss. But I do not fear the change to my body. My body is just the house I’m renting for this “season” of my life – I don’t own it and like even the best rental, the lease will eventually come to an end. I will take the best possible care of my body (I always have). I will face this challenge and I will survive this disease. But I will also remember that my body is just housing – no matter what happens to it, I will remain safe and strong within.


I am not my body.


I am not the oyster.


I am the pearl inside…

http://www.flickr.com/photos/wanhoff/ / CC BY-SA 2.0

Wow....what a ride!

The last 30 days have brought a whirlwind of change into my life....some good (my best friend got married, a new tech contract, new work mates, new routines), and some where it may take me a little time to find the good...but I know it's there!  In my younger days, I would have just powered through and found myself very run down and more vulnerable to infection.  I've heard it said that the definition of insanity is "to do the same things, in the same way, and expect different results!"

One of the biggest changes is that my friend Janey (you met her last month) received a breast cancer diagnosis.  I have to admit that those of us closest to her are pretty shaken.  She has asked to be a guest writer to this blog and share her story as it unfolds.  Of course I agreed and the first installment will publish tomorrow.  Please hold good thoughts and send good wishes her way as she prepares for surgery this Saturday.

November is National caregivers month, and no discussion of caregiving would be complete (in my opinion) without a brief chat on self care! In order to be available for others, you must "fill up" and make sure you have some reserves to share. For once, I have followed my own advice!!! In order to cope with all of this change, I've had to really pare down and take care of myself.  I'm not sure that I've done the best job, but I know that in the past 2 weeks, I've been much calmer about the changes in my life and feel more serene....so I guess that's good!

So...caregiving for me is to:

1. stop and admit that there is a whole lot going on
2. learn the fine art of saying no, or not now (at least until I've restored a little balance)
3. stick to the priorities and cut out all of the "nice to have" or "nice to do" tasks/events
4. get a massage!!
5. get to bed early, every night!
6. take my vitamins and extra emergen-C
7. read and reflect on the messages in the Daily OM
8. catalog my blessings in my gratitude journal, every night
9. just breathe!

How do you take care of yourself?  Please share your thoughts.

November is National Caregiver Month!

Welcome to November! This month we honor caregivers, and traditionally we think of caregivers as those who assist anyone with chronic or catastrophic illness. I’ve had that job! It is hard work, but can also bring great joy. To honor caregivers everywhere, the Heart of Hope bracelet benefiting Hospice and Care giving Programs debuts this month. It’s a beautiful combination of dusk sky and evergreen crystals. The prototype has received rave reviews!

This month, I’d like to expand the definition of care giving. As I did my research, I was amazed at how quickly my own horizons broadened. Here are just a few of the many caregivers in my life that I would like to publicly thank!


I LOVE my vet clinic!  Seriously!  For more than 20 years, Dr. Lenz, Dr. Bedros, Loretta and the rest of the staff have helped me through all of life’s ups and downs as I tried to be a good pet parent. Not only have they cared for my pets, but they have cared for me personally, by cheking in on me to make sure I was OK, and sending sympathy cards when I’ve lost one of my furry companions.


The majority of us find a hairdresser or barber and stick with them until they quit, retire or die. And I daresay most of us are very unhappy to have to look for a new one?! Month after month, they keep the threads of life straight for a myriad of customers. They celebrate all of the important moments in our lives and make sure we look our best. I am truly grateful to Alisa, who is responsible for my "red" and makes it very easy for me to put my best foot forward...on any occasion.


I am very fortunate to live in Northern California where the public transit is extensive, reasonably priced and very reliable. Every day, the WestCat bus drivers take the lives of thousands of riders into their hands and manage to dodge surly drivers, crazy motorcyclists and potholes the size of small lakes to deliver us safely to a designated spot, on time, making countless trips each day. Train operators herd thousands more into the equivalent of oversized tuna cans, And most of the time they manage to do it with a smile! I owe my sanity to these quiet and courageous road warriors!


Consider the barista who remembers that you take soy and honey in your morning chai latte, even if you don’t show up every single day – Thank you Laura, Belina and Jenn! In addition to my budding career as an artist/blogger, I work in technology, helping to build better software. I just finished a contract at Genentech and there is an amazing cafeteria on my campus – one that would make even the most serious foodies take notice! Steve and Dwayne and their team mates work hard to feed 500+ employees – around the clock. They have a wide variety of healthy alternatives (think...very proud moms!) to choose from, every day, catering to a very diverse customer base, culturally and in food preferences. And like good caregivers, they each listened – tailoring cafeteria style eating into a personal dining choice.  Extraordinary!


There are more…lots more! Pastors, nurses, childcare workers, grocery baggers, garbage collectors (where would we be without them!?). I think care giving can be re-framed as “giving care” and that can apply to so many people in your life. So…who takes care of you? Take a minute to post a thank you here!