Have you had conversations with your family about your end-of-life wishes?  Dying with dignity is a part of life well lived.  Most seriously ill patients are unable to express their wishes and also are unable to communicate any suffering at the end of life.  In more than 88% of doctor-patient- family conferences during serious illness, there was no conversation about the patient’s own values and wishes. (Critical Care Medicine April 2015).

Decisions about using life support (breathing machines, dialysis, transfusions etc) usually hinge on trade-offs between the length and quality of life.  And they are influenced on the person’s understanding of their expected level of function, independence and comfort.   But most people who are critically ill are incapacitated and therefore the family members try to make the decisions for them.  So does your family REALLY understand what you would want?  And do you understand the implications of the life-support treatments?

You can be comfortable and have your wishes carried out but only if you take the right steps now.  Talk with your family.  We all will die, but some of us will have a plan in place to die in comfort.  You can too!

Well, to follow up, My aunt was seen in a major medical center hospital (read University hospital).  They correctly diagnosed her with a very fast heart rate which was causing the loss of consciousness (something I had also determined as a diagnosis myself.)  She is now on the correct meds to slow her heart rate and has had no incidences since!

So this is important.  I can't even count how many times people tell me their MD, who is a part of the 200 bed local hospital, is "world renowned" in cardiology, or lung disease, or kidneys, or whatever.  The way you become world renowned is to work in a large university-affiliated teaching hospital (for years!) and continue to do research and publish the results.  Small local hospitals do not require their MDs to read a medical journal let alone do research and let the world know what they found by publishing.  So, no  that doctor may be world renowned, in their head.

So it pays to be suspicious.  You ask why?  Well, let's put it simply:  if you bought a Ferrari, or a Lexus even, would you bring it to Joe-Bob's car fixing shack for repairs????  I highly doubt it.  But yet, we will blindly trust any doctor and not even ask appropriate questions prior to major procedures!!

I tell my clients to ask some simple, direct questions such as "What is the recovery period?"  "Will I be active enough after the surgery to return home?  Or will I need extended rehab in a nursing home?"   What if this doctor's complication rate is off the charts?  Do you think they are going to share that info? When was the last time they read a journal citing that this procedure was state-of-the-art and currently evidenced-based?  When they cannot answer these questions readily...get another opinion!

Just some food for thought.  It's your body, spouse, friend, family member.  Are you really looking out after yourself or your loved one?  Or are you blindly trusting that this is for sure the honest truth? Yes it might be.  Or...maybe NOT!  We can help!

The other day, I was speaking to my elderly Aunt.  She was telling me that she found herself fainting for no reason.  She told me one day she woke up on the kitchen floor.

I was alarmed.  I asked if she told her doctor, and she did.  He had her undergo many tests but found no reason for the sudden loss of consciousness.  Now, this is not normal and these symptoms have meaning.  My conclusion was either a cardiac problem or something like a stroke.  She told me she had no problems after she fainted. 

Of course., since I am the family Advocate, especially for health-related issues, I urged her to seek a second opinion at a large University center, where they would have more specific diagnostic tests.  I searched and gave her some physician names to call and set up appointments.  She was very thankful, but this is what I do. 

I cannot sit by and just blindly trust anything a doctor is saying.  These statements need to backed up by evidence-based medicine and research.  Only then can we make decisions and proceed or elect to wait and see.   I told my Aunt, ‘The worst case scenario would be that  you suffer a big stroke and end up in a nursing home the rest of your life.’  That was appalling to her and I think that caused her to rethink the potential severity of these symptoms.

But the best I can do, as head of Family Medical Advocate is to BE that expert advocate and help people make informed choices.  I am waiting to see what happens next.

What Do You Think?

I recently read an article about discussions about 'What If?' situations and discussion about what your wishes will be at the end of your life.  It was interesting! The Institute of Medicine came out with a 500-page report earlier this week urging more conversations and action surrounding end-of-life care.
The Institute of Medicines (IOM) “Dying in America” report says Americans should start having end-of-life conversations much earlier, even when a teenager gets their first driver’s license at 16. 

Oregon has been out front of other states in this area, with a program developed in 1991 to ensure the wishes of those with advanced illness or frailty are followed.  Called "Physicians Order for Life-Sustaining Treatment", the form allows people to express their wishes about the level of care they receive.  “It is a tool that would help any of the problems they’re discussing,” she said.

Most Americans haven’t documented their wishes for end-of-life care. A national survey in 2013 found that fewer than 30 percent have done so!!  The report also found gaps in the health care system for patients at the end of life including very few doctors specializing in palliative care and inadequate support for dying patients.

We never want to have these discussions..After all, we are having a great time living today, right? But in a split second, you can be clinging to life and unable to express if you are in severe pain or what you want to do.  Once you end up in the ER, the Healthcare Team has one focus:  To try to save your life...at ANY cost and ANY quality.  After the ER, you end up with a situation that, if not properly discussed and written down can be something your would never agree to.  Asking the right questions, and thinking hard and long about what you really want can make all the difference...for you AND your family.

Can You Imagine?

Each day that I work,  I am realizing that despite all our plans and hopes to have a wonderful long life,  sometimes, (it seems often for me) life throws a big curveball to many good people. This week and last, I cared for 2 people that had just been diagnosed with Lou Gerhigs disease or ALS.  Now, this is not your run-of-the-mill disease.  The fact that both of these people had just been told they had a terminal disease…well, it broke my heart, and I know it was a terrible parcel of news for both of them.  Just think:  What if you’d been told you have a disease that has no treatment and no cure?

But still, this is real, and they need to know that they will be comfortable until the end.  As a professional, I suggested that they talk with our Palliative Care Team to find out how they could help alleviate the symptoms and keep them comfortable.  I sat with both of them, and we discussed this and why it would be of help.  And at the end, they could transition into Hospice, so that they did not suffer with breathing difficulties.  Since we cannot change the disease why not help them to pick options now so that they, and their families know who to call for assistance?  We should be able to direct a good death as well as a good life.

These are real-life examples of the fact that we cannot control or predict our future.  And it also reminds me that planning for the end in a very specific way can create at least some piece of mind.  So I encourage you to sit down and discuss What ifs? with your family.  Be open and honest and consider that we may be the next one that gets the bad news…or the one that ends up seriously ill or injured in an ICU.  None of this is nice to discuss, but it is reality.

Plan Ahead for Getting Older and the Potential for Continuing Care

When do you think you will start to need help with simple activities of daily living? What if you are hospitalized and cannot go back to your home? Wouldn’t you want to choose where to live instead of your children (if you have some)?

We all want to maintain control of our lives. We want to stay where we are, and this works well as long as we can take care of ourselves. Once we cannot, we will have to depend on others. This is one way to ensure that if and when you are unable to live alone, you can have made this decision and feel confident about it. We should think about this in advance, and consider how we will transition into another living environment.

An easy way to evaluate how well your home would work for you should you become disabled is to look around your home now. Can a walker or a wheelchair get into the bathroom? Can you get into the shower if you cannot get over the side of the bathtub? Could a wheelchair get through the doors of your home? Many homes have door frames that are less than 30 inches wide. Not enough to accommodate a wheelchair. Do you have to go up steps to get into the house or go up to the bedroom?

All of these questions can shed light on whether or not you can reasonably continue in your own home if you need help. There are several facilities that you could live in, from a continuing care retirement community (CCRC) to assisted living. Both offer housekeeping, laundry, meals, entertainment and activities. Many assisted living communities allow the residents to live privately in an apartment, but also may offer skilled nursing should you need it for short periods of time.

The time to consider, evaluate, look around and choose is while you can. After you have experienced a serious medical event you may not be in any shape to make your own plans. You can find out more information at the caregiving resource center: www.CARF.org.