End of Life Directives – Engage with Grace

Important concept that everyone should pay attention to. This is a difficult conversation but a very important one given the increasing capabilities of medicine

Engage with Grace is a Viral Social Networking Initiative to get everyone to start discussing their desires at the end of our lives

Visit the site here

Simple important stuff – not all cures are worth it to all people and letting everyone in your life know what you want and providing them with the necessary tools (typically power of attorney and or advanced directive) to help them fulfill your wishes if you become incapacitated

Understanding Your Health

1 in 10 Americans understand the health care system…….
So says the Agency for Healthcare Research (AHRQ)This divides up as:
12 percent were proficient
53 percent had intermediate skills
22 percent had basic skills
14 percent had below basic skills

Frightening stuff. Some good advice on their site worth repeating

• Ask questions. Don’t be afraid to ask why you’re getting the medicine prescribed for you. Ask what can go wrong. Ask how to take it
• Ask what the alternatives to treatment are. Do you really need this treatment? Are there others that are less painful, costly, more effective, longer lasting?
• Ask for a second opinion. Your doctor won’t be offended. In fact, you’re a fool if you don’t. It’s simply a smart move.
• Ask how much treatment or surgery costs. This cost isn’t imaginary. It’s real and can affect your pocketbook with copays and deductibles.
• Find out if your insurance company agrees to pay for your care. The last thing you need to worry about is whether you will be reimbursed for your care. You need to recover, not be afraid of the cost.
• Follow your doctor’s advice and call them if you have outcomes that are different than discussed. Make sure you know who to call and have the numbers handy before you have surgery.
• Be proactive and engaged. If you don’t someone else will take up the time and you’ll be left wondering why you had a bad outcome.
• Take a family member or close friend with you when you go to the doctor or hospital. That way you don’t have to spend your time trying to remember the advice or instructions given to you. After all, you’re the patient and should be able to act like one!

PGD – Pre Implantation Genetic Diagnosis

Listened to a fascinating podcast on the NPR On Health from Oct 6 (you can listen below or download it here) that featured a section on PGD or pre-implantation Genetic Testing. The article featured parents of a child who suffered from Spinal Muscular Atrophy (SMA)

This couple watched their son died 8 weeks after birth from a rare genetic condition Spinal Muscular Atrophy (SMA) (you can find a support group here. The couple wanted more children but not surprisingly after this harrowing experience they wanted more children but did not want to have another child go through this experience.

Another couple who’s father has a strong genetic component of colon cancer in his family also elected to undergo the process to select embryo’s that do not carry this gene that predisposes the carrier to a higher chance of cancer.

Both cases generated a vigorous response from many religious groups who object to any form of intervention and especially so in the second case that where objections included the concern of this being the first step towards gene manipulation towards the “perfect child”

I don’t know the answer – needless to say as with all things they can be used for good and bad purposes (a quick search online for PGD features “Gender selection” and “IVF Baby Guarantee” sites). At the end of the day we all have to arrive at our own position and comfort level with the application of technology. While I respect the views on both sides I defer to some great personal friends of mine who had a child in the 80’s who was eventually diagnosed with Angelman Syndrome (you can find out more about this condition here). The resources available on this were not available when they where going through this and I remember vividly the difficulties for this family as they struggled to understand this condition and its impact on them, their existing family and any potential future family. They have been a model family caring for their child in a loving and nurturing family environment. They overcame enormous challenges and difficulties with little help and love all their children as all parents to.

They had to make many choices, often without the benefit of knowledge or data and did the best that anyone could do in those circumstances but were clear about one thing – they did not want to bring another baby into the world with this condition.

I know I am no position to “understand” what they have been through or deal with every day and no matter my position I respect them for all their choices and would encourage everyone to be the same. Respect other people’s choices without the reverting to harmful rhetoric and imposed viewpoints. Choices rarely if ever come in black and white and we all do the best we can to make the right ones. In the case of PGD it’s a tool that offers great potential for those that need it.

Section runs from ~ 5:35

Medical Insurance and Medical Bankruptcy

An old report highlighted recently in the British Journal of Healthcare Management in a review of the National Institute for Health (NICE) “Denial of life-saving drugs is not NICE” subscription required for this pdf covered the issue of those wanting to spend their own resources on their medical care. I talked about this issue in another post (Balance between Private and Welfare Medicine) but it was the reference to a 2005 study by Harvard University Researchers: “Illness and Injury as Contributors to Bankruptcy” that reported that nearly half of all bankruptcies in the USA were at least partly the result of medical expenses hat is shocking. Even more so when 75% of those filing for bankruptcy reported having medical insurance at the onset of the illness. Those who did not have it prior to onset would no doubt have fallen foul of “pre-existing condition” clauses.

There’s a crisis if ever I saw one – families descending into debt and bankruptcy as a result of medical bills and the spiraling costs and inability to pay.

In my mind this is because medical insurance is not “insurance” per se

From the Free Dictionary

Coverage by a contract binding a party to indemnify another against specified loss in return for premiums paid.

But my guess is medical insurance is more about:

The periodic premium paid for this coverage.

I like the Wikipedia definition

Insurance is defined as the equitable transfer of the risk of a loss,
from one entity to another, in exchange for a premium, and can be
thought of a guaranteed small loss to prevent a large, possibly
devastating large loss

Somehow this got lost in the provision of medical insurance for these folks? But answers.com features a definition on medical insurance that reveals the gap

Health insurance is insurance that pays for all or part of a person’s health care bills

And there lies the problem – most have part coverage and the part that is uncovered escalates at an alarming rate with serious illnesses, chronic conditions and in the case of diseases with limited treatment options that are often priced far above any typical plan coverage.

When checking your insurance find out what you maximum liability could be in the case of any of these circumstances

iPhone Health Emergency Applications

Of the three mentioned in this post only one is free
PhoneAid – Free
FirstAid – $0.99
1st Response Emergency Kit $2.99

“Free” Healthcare is not the answer

I grew up in a “free” healthcare system and there is much that is right about the NHS but the fundamental point that is forgotten is that it was not free. A Post “Aloha Free Healthcare” addresses one of the challenges when you make something that used to cost money (actual out of pocket cost) and make it free…..it failed and for some simple human nature reasons.

The free coverage was supposed to be for the low income families but those that could afford were dropping their coverage so they could get “free” coverage as well. It reminds me a lot of the challenge to building a business and the desire to sign up customers. There is often a push by the sales team to give away the product to the first few users to get some initial experience, case studies and actual users to talk about. The problem is when you give it away the value perceived by the recipient is often precisely that – zero….

Universal coverage and accessible healthcare for everyone is a good thing – the NHS comes reasonable close to his but is not the only way to achieve this goal. We will find a solution but do not be misled by “free” in any phrase linked to healthcare

The Balance Between Private and Welfare Medicine

The British National Health Service (NHS) has long been cited as an example of a system that is broken and a system that works and the viewpoint often depended on the the individual making it and their personal beliefs

Those that have experienced it find it hard to complain too much and like Social Security in the United States it is considered the “third rail” in politics. Don’t mess with it! For the British public it is an essential component of life and while it has failings and difficulties for the most part it delivers excellent care to the the British population. Coming form that circumstance to the United States was a severe shock to the system and the wallet and loosing what certainly feels like a fail safe coverage option is very difficult to swallow as you struggle to provide for yourself and your family.

So this article form the NY Times in February this year (Paying Patients Test British Health Care System) that covered the issue that has been for the most part glossed over for many years the “hopscotching between the two systems – private and public. If you have money you can pay for portions of care that might otherwise not be covered by the NHS. In the case detailed Debbie Hirst’s was ready to sell her house to pay for treatment with Avastin (Bevacizumab) a recent monoclonal antibody treatment with a very high associated cost – $120,000!!! But even though she is willing to make those personal sacrifices:

Officials said that allowing Mrs. Hirst and others like her to pay for
extra drugs to supplement government care would violate the philosophy
of the health service by giving richer patients an unfair advantage
over poorer ones.

Unfortunately for Mrs Hirst she is the straw that broke the back or the focal point for the issue that has been present in the system for many years. IN fact there is a whole insurance industry that supplements NHS  treatment with private offerings that essentially allow line/queue jumping and access to treatments or choices that would not ordinarily be allowed.

Is it just me or does this seem entirely wrong – there is an existign system that provides a catch all, it fails in some circumstances often due to overwhelming needs and insufficient resources. The things that end up missing or delayed are elective non-urgent care and very high cost care. Those that can afford off load the burden from the already stretched system, access the care and everyone wins. No doubt there is resistance because some of the problems associated with inappropriate care or poor choices end up back in the NHS system (ie the NHS ends up paying and treating others mistakes). While that’s true it is an inevitable part of any system that offers choice.

I’d bet dollars to donuts that if the patient had been Alan Johnson’s (The Health Secretary in the current UK government) wife, parent, daughter or <insert close family relative> the result and reaction would be different.

Meanwhile the “good news” is that Mrs Hirst’s condition deteriorated and now she is eligible as a last resort for Avastin (not a cure but to extend her life) but as she says

“It may be too bloody late”

My sympathy goes out to her and her family – all this is difficult no matter how you deal with it but with all things balance and reasonable behavior should prevail. Do I wish al patients who coudl benefit it coudl receive it sure. If that’s nto possible those that can should be able to access the care/treatment.

In my mind the more fundamental issue and concern is how ANY drug can have a cost so high – we understand the high costs of developing drugs and much of this is regulation and supposed protection but the prices and difference in prices charged is not part of that reasonable behavior. Fix that problem and we might have a better chance of fixing some of these problems

Maternity Care Mother and Baby

A recent article in the British Journal of Healthcare Management titled: Safe birth: at last, it’s everyone’s business (subscription required) made for interesting but not surprising reading. The good news was that Maternity Services in the UK are overwhelmingly safe but still not safe as it could/should be. The report from the Kings Fund – Safe births focused on the what can be done to improve the situation

There are many drivers helping to improve things but costs in the UK are currently not one of them despite “50% of all litigation payouts int he NHS being associated with Maternity Care

There are also considerable financial penalties associated with failure. Litigation costs as a result of failure in maternity care make up 50% of all NHS Litigation Authority (NHSLA) payouts. Yet trust boards, because of the pooled approach to payment as a result of the Clinical Negligence Scheme for Trusts (CNST) and NHSLA, have been cocooned from the full financial cost of failure.

But the point that safety is “everyone’s business” is an important one and relevant to everyone – not just the clinical staff.

Childbirth is a natural process and intervention is not always a good choice for mother or baby. The guidelines when picking an obstetrician or midwife should include at least these questions as suggested by the Childbirth Connection group

• How do you feel about epidurals?
  How do you feel about labor induction?
  How often do you cut episiotomies?
  What are my options if labor slows down or stalls?
  During labor, can I have my baby monitored with a handheld device or occasional electronic fetal monitoring (EFM) rather than continuous EFM?
  What are your rates for Cesarean section, assisted vaginal delivery and episiotomy?

Just in case anyone gets the wrong idea – I am not suggestion no intervention, just the process fo an informed decision that includes an understadning of what the choices are and what they mean to mother and baby.

You can read more about the US experience in my Accelerating the Adoption of IT in healthcare Blog here

Simple Things – Medication Lists

Just keeping a clear record of your own medications, written down to include the date for starting (and finishing), dosage, and the name of the drug (spelt correctly)

It might seem such a basic idea but you would be amazed at how difficult it can be to get this information in a busy clinical practice. Keeping this list up to date for your elderly parents is even more important as the list of drugs gets very complicated and difficult to keep track for the elderly