End of Life Decisions and Care

End of Life

My heart breaks when I think of someone being alone in the hospital to help a patient, and not sure what to do.  It's not always because of the care they are receiving, but also because the loved one may not know what the patients last wishes are.

Bill (names are changed) is with Gary who he cares for as a paid caretaker.  Gary is elderly and sickly.  Bill has been with the family for many years and is watching Gary's decline.  As Gary enters the hospital and now can not speak for himself, there is no direct guidance on what Gary's wishes might be.  Do they fight for him to survive with feeding tubes and forced treatment to keep him alive or do they send him to hospice to die peacefully?

When the patient has family, and money, people come out and want to help make decisions.  This causes even more turmoil.  As Bill watches from the sidelines only able to give guidance to what he believes would be best knowing Gary so well all these years, he shares with me that he will go right back to his own family and make his wishes known.

Having a support system available to you before you need them is crucial and having these conversations though unpleasant are much needed.  The only guarantee we have in life is that we will die.  Why not than have the conversation now about what we might want?  It can be changed later. If you are healthy and young, you may want the medical team to fight for your life, but if you were so severly injured or sick, with no chance of a happy ending and would rather not be kept alive through forced feedings or machines, make these wishes known.

Don't be afraid to talk about it.  It's a gift you will be giving others.  

Here is a Health Care Proxy Form to help start the conversation.   http://www.pulseofny.org/resources/HealthCareProxy.pdf

Simple Lessons from NPSF Congress

National Patient Safety Foundation 15th Congress, and the simple lessons learned

I just returned from the National Patient Safety Foundation 15^th Annual Congress.  I know it should be better attended because I am a big fan of NPSF and the programs offered.    I happen to like that it is not as big as some other conferences.  It gives it a more personal atmosphere and people get to know one another.  You can pass each other in the halls and elevators and recognize faces.    The content of speakers are as good as one can make of it.  There are programs available for everyone’s interest.

The common themes, once again that I heard from participants is that they have found tools to go back and make it happen in their own hospital.

If this is what is happening when at the conference, why then am I still seeing such problems as the bedside?  If the one nurse doesn’t want to wash her hands or gives a patient an attitude about it (as a patient safety friend just shared during her hospitalization) then there is still a disconnect between what is actually happening at the bedside and these conferences.

When I checked in to the hotel and walked to my room, a staff person walked past me with no greeting or acknowledgment.  My first reaction was that this was not a Marriott Hotel.  At a Marriott everyone greets the guests.  Although I was greeted by every other staff person at this hotel, it stood out that one did not greet me.  It surely didn’t change my opinion of the hotel, but the experience stayed with me.  It’s often no different in hospitals.    Care may be perfect but we often remember the one incident that made us uncomfortable.  That is why we need 100% participation in safety, service and care when in the hospital.  There is no room for the one straggler.

Although so much more comes out of attending a conference like this, I just wanted to touch on that small piece.  Other things I heard was how to start a patient and family committee at a hospital. Ways to include patients and families in programs and projects.   Calling a Code Lavender when a patient may die or has died to send healing thoughts and prayers to the family and staff who are also in pain over this loss.  The list goes on and on.  Two days well spent.

 

Hospitals That Do it Right - Patient Safety is Priority

Finding Perfection

I just had the opportunity at a meeting to learn of hospitals that are doing such extraordinary work improving bad outcomes that they are winning awards and sharing their information.   Finding and sharing solutions is important to the industry to learn the best way to save lives, save money and improve the care and satisfaction of patients. 

Over the years I have heard that it is “almost impossible” to avoid all hospital acquired infections or injuries, but more and more I am learning that this is not true.  Those hospitals that are willing to work hard at changing the culture of staff and even the patients and their families will be able to reduce injuries.  It’s not impossible, it is hard work and we, as patients must demand perfection. 

The people who work in the hospital usually know what needs to be done.  But, on many levels there is a breakdown of either communication or people get too comfortable and forget proper procedures – as simple as hand hygiene.  As I sat on a bus with a physician following this meeting, I shared with her that the bus driver knows what he is supposed to do.  He knows that he needs to be well rested, stop at stop signs and drive the speed limit.  He can either choose to follow these behaviors……or not.  There is nothing we, as the customer can do to change what he will decide while we are in motion.  Why then are we, as patients expected to remind hospital staff to wash their hands, mark the site of surgery or make sure we are getting the correct medication?

A nurse at one of the hospitals that shared their stories, caught that a medication, meant for a small child was about to be given an adult dose.  The medication error went through numerous check points with many opportunities to be caught.  But, because this nurse stopped to check every medication as she was trained to do, this child’s life may have been saved.

The speakers all agreed that the change must come from the top.  Senior leadership willing to go to the end with a patient safety agenda that demands perfection, willing to fire people who don’t comply and reward those who do.

I still believe it must come from the customer too.  We must demand that it can be done and do what we can to share the information when we see something done correctly.

Care Coordinators

Care Partners

The first thing I asked was “is she safe?”  The elderly man on the phone called to tell me his wife fell and is now in the hospital.  They took her to the community hospital (all names are being changed for obvious reasons) and I waited at the general hospital, he said in a shaky voice.  No one told me where they were taking her.  He was very distraught and now felt even more vulnerable.

A loving couple in their 80’s and never significantly separated; he is her caretaker and just recently realized he may not be able to care for her any longer.  Her dementia, falls and incontinence are taking a toll on both of them.  “How can I help”  I asked.

He felt she was safe where she was but didn’t know what he needed.  In his long career, he was an expert at his work.  As a coach, he is an expert in that field, but when it comes to his need for healthcare services, he had no idea.  I went to his home and together we found his insurance policy, contact information and names.  I took their ID numbers, birth date, address and other information and started right away making the calls.

As a care coordinator or patient advocate, there are many roles we can play.  I couldn’t possibly tell him “This is what you need to do”.  He wasn’t in a position to do anything but visit his wife and hold her hand.  It took me a few hours but well worth the time starting a claim on their long term care insurance.  When I asked him about his policy he said “I just pay it each year” and knew nothing else about it.

I have been told that I should charge for the services we offer at the nonprofit organization PULSE of NY that advocates for safe care.  Helping to start a claim and having someone talk to the family about the available services, fixing the wife’s walker so when she gets home she is able to go to the bathroom with the help that is needed are all samples of patient’s safety.  How does one put a price on the peace of mind we are able to give to one another just by helping where it is needed?

Any small community group can do this for each other.  Care partners can all take a role whether its phone calls about insurance, equipment, medication or helping to manage doctor’s visits, one person can be the care coordinator and never has to leave their home.  From their phone they can just log on who will be coming to check on the patient, what they are able to do and at what time.

If more communities had care coordinators and care partners watching out for each other, we could all rest assured that our loved ones are being cared for and helped by people they know.  This won’t take the place of qualified nursing or medical care, but it is a way to make sure our loved ones are getting the best possible care.

Below is a sample care coordinators chart.

Start off by sending out an e-mail or make some phone calls that this person may (or will) be needing help.  Offer some choices of what people might do or ask them what they are willing to do.  Most people want to help but aren't sure how.  Are they a leader and can organize people?  Do they cook, are they able to deliver meals, visit?  Are they more assertive that they can help plan their doctors visit,  research medications or check on side effects?   All that needs to happen is someone decide the first step and you can plan a care team!

To Boston With Love

Following the Rush

In the days following the Boston bombing, we can carefully reflect on the hard work and heroism of the people of Boston.  No doubt the medical professionals outdid themselves over and over again.  Many training their entire adult life for the moments they can work long and hard to save lives and be prepared for the rush of people who depended on them last week.  Skills, expertise and compassion showed through in the reports of nurses and doctors who did their job under such duress only few of us could ever imagine.  May we never forget that this is the healthcare system we know and love and though this can never take away from the pain many have experienced because of its failings, we also must be grateful for the people behind those walls who are saving lives and putting people back together the best they can with the tools they are given.  God bless every one of them.

Patient Support

Medical Injury and Trauma

I took a two day course in New York City called Pastoral Crisis Intervention.    I called ahead to find out that I didn’t need to be a pastor or religious leader to take the course.  Although most of the sixteen participants were clergy of some type, the skills I learned in those two days had very little to do with being a religious leader.

Tragedy and trauma that someone may encounter after an event can be obvious or subtle.  Learning the mental state of a person following a trauma, making an assessment and possibly a need for referral must be fast and accurate.

Patients or family members who have suffered a medical error or anything that causes them to distrust or question the healthcare system can be severely traumatic.  At our most vulnerable, due to illness, injury or just age, we need to trust those who are caring for us and often making life decisions.  Each time we are asked to sign a consent (which won’t happen in an emergency anyway) we are trusting the professionals to do the right thing.  When that trust is broken, then what?  It’s not like we can say let’s do this over. 

There is a cost to not receiving help that goes beyond the patient’s rights.  Patients or their family members may avoid care until an illness needs attention that costs more and takes more time.  Avoiding treatment because a patient is fearful of the healthcare system is a symptom of post traumatic stress.  Not being able to overcome their fear, anger or depression because someone they love was injured or killed by a medical error, medication error or hospital acquired infection can be deadly.

When there is an unplanned outcome with someone’s medical treatment, it is important that they are assessed for trauma.  It can make a big difference in their future medical care and that of the people close to them.

When My Work is Easy

Patient's Safety and So Much About Communication

A man from the north eastern part of the country speaks to a colleague in the south about his brother’s friend in a Long Island hospital.   He feels that the care is below acceptable standards for a variety of reasons.  Knowing about PULSE of NY, the person in the south recommends that I might be able to help.  The man from the north calls me and I tell him he must have his brother call me directly.  It is not my place to call when I hear a story through someone else.  I am not looking for cases and if the patient or family have worked it out, I have no business getting involved.

Minutes later I hear from the brother, Bill (names are changed).  Bill is visiting Long Island when his friend became hospitalized.  He is concerned about the care.   Bill is not being permitted to stay overnight by the nurses.  He feels there is a shortage of nurses and his friends care is being compromised.  He does not feel he is getting a full accounting of his fiends care so he can be helpful.

I offer to go visit but first I will make a phone call.  I ask him to be honest, has he lost his temper?  Who has he spoken to?   Does he have names and dates?

When we finish this conversation I call to management at the hospital.  Explaining briefly what is happening, within minutes of hanging up the phone they are at the patient’s room clearing up misunderstandings.   The patient’s loved one’s received explanations and apology and days later the patient is released with only positive things to say about the hospital and care received.

The problem; The senior level staff are busy running a hospital expecting the people at the bedside are giving quality and patient centered care.  With the possibility of shortages of staff, overwhelming admissions and paperwork, compassion and communication can easily get lost.

A gentle reminder that there was a communication breakdown happening within the hospital is the best service we can offer.  In this case, as with most, there is a legitimate concern that rules and policies are not being followed.  Patients are permitted to have someone at their side.  There was no reason Bill couldn’t stay, but because that’s the way it’s always been done, no one was looking at how they could make this work so the family could feel safe and satisfied.  It took an outside phone call to help build a bridge to better communication.

How do we measure this success?  Would the outcome have been the same if there was no intervention?  There is no way of knowing.  What we do know is that there was a happy ending to this story.  Another day and the patient may have had a bedsore or been given the wrong medication or worse were the friend not at the bedside.  There is no system in place to count the lives saved by an advocate’s intervention.  If there were, we could start counting.

Safe Doctors

Physician Profiles

An article in Long Island Newsday by Reporter Robert Kessler was released on Wednesday March 20, 2013 that Dr. Gracia L. Mayard, a New York physician surrendered his license to prescribe controlled substance in February but continued to prescribe Oxycodone.  There was a warrant out for his arrest.

Mayard’s license was surrendered on February 7 but a pharmacist reported a prescription written on February 28.  Just yesterday, on March 21, Maynard was “captured”.  The report says that he brought in $1.2 million in less than two years.

It’s safe to say that this physician is a criminal and a drug dealer and a danger to the public.  He had been selling prescriptions for $150.00 the report says.

When we look up the name Garcia L. Mayard on the NY State Physician Profile website www.nydoctorprofile.com,  Mayard comes up that he is a licensed practicing physician in New York State.  He is listed as a practicing general surgeon with two offices in Brooklyn, NY and no discipline against him. 

Healthgrades also has him listed as practicing in Brooklyn and Vitals.com has him listed with a perfect rating from a satisfied patient.

It is appalling that this story has completely gotten past our NY State Patient Safety Center that was developed to protect us from unscrupulous doctors such as this giving fine physicians a bad name.  I understand that we can not play judge and jury and he is entitled to his day in court, but there must be a system in place that patients (and their concerned family members) are better aware of these happenings so new people don't fall victim (in case it is true).

Patient Safety Awareness Week - What's your point?

Patient Safety Awareness Week; Where is it?

In just one hour on the radio today I heard commercials for chronic obstructive pulmonary disease (COPD), breast cancer, diabetes, heart disease and more sickness and ailments than I can remember.  Sometimes these commercials are suggesting medication, sometimes it’s just to raise awareness.  Either way, it works. 

As we are now upon Patient Safety Awareness Week again this year, not a word again to the public about patient safety.  Nothing, Nodda, Zip!

For each of the conditions spoken about on commercials, patients need to be made aware of the possibility that the medication that they receive at the pharmacist can be for someone else if they don’t check the label. There are 1.5 million peopleinjured by medication errors each year.  When diagnosed with a new illness, the patient needs to be sure any new medication works with their other medications.  They can go for a second opinion because according to Dr. Mark Graber, founder of Society to Reduce Diagnosis Errors in Medicine, a New York Times article (Oct 2012) the average emergency room physician during his/her career will send home 17 patients who will die an avoidable death within 7 days due to misdiagnosis.

According to The Joint Commission there are still over 2,000 wrong site surgeries each year.  This can be avoided if the public knows how important it is to mark the site of surgery.  That means breast cancer patients or diabetic patients having surgery.

Patients hospitalized with heart disease should know that according to the Center for Disease Control (CDC) one out of every 20 patients will contract a hospital acquired infection and 99,000 peoplewill die each year.

The outcry this week is about the cost of Medicare or government cutbacks.  But who is paying for the care of those Medicare patients who have the second and corrected surgery, are treated after a medication error or when the patient falls in the hospital adding another few thousand dollars to the hospital bill?  If Medicare no longer pays because they refuse now for hospital errors, at some point we are absorbing the cost either financially or with the risk of our safety because hospitals will have to cut back.

There is the  patient with high blood pressure who doesn’t understand the doctor’s instructions and takes his medication incorrectly, doesn’t keep a follow up appointment or doesn’t share all his symptoms so something may be missed.  These problems could easily be avoided if the patient was encouraged through a patient safety campaign to bring a family member or friend with him to the doctor and help take notes and ask questions.

What about those 99,000 patients who died last year from a hospital acquired infection?  Was their life insurance paid out long before it need be?  We know they are no longer paying into their insurance policies.  Isn’t that another economic loss?  Or, were there 1.7 million lost work days because that’s how many people were said to suffer from a hospital acquired infection each year according to the CDC.

So, we try to get a presidential proclamation again this year.  We visit Senator Charles Schumer’s (NY) office, give them the statistics and nothing.  All we want to do is raise awareness.    Patient Safety Awareness Week is an opportunity to celebrate patient safety and all that is being done.  The media doesn’t cover it, the news doesn’t cover it, the politicians don’t cover it, but when the next wrong site surgery happens and the next misdiagnosis happens and they make the news,  I will just sit back and say “What’s your point”?

Call After Call

Following the Prompts

The e-mail I received was about a woman who was going to cancel her medical treatment because she felt she was wrongly billed for her MRI and sonogram while getting cancer treatment. She couldn't possibly afford the continuation of her care. The e-mail came from LIWA, Long Island Women's Agenda, an organization that networks women's organizations and companies of which PULSE of NY is a member.

 

I have no expertise in clearing up billing but I am willing to learn. Especially when someone has other things, such as the possibility of facing a cancer diagnosis or treatment on their mind. Although I don't consider billing to be a "patient safety" issue (of which I try to only focus on) it is part of the patient's hospital experience and every chance I get I like to learn more about it.

I collected the pertinent information from Mary (name is being changed) and started with the insurance company. I followed the computerized prompts, was asked if I would be willing to take a survey at the end of my call and finally got someone who found the file that was denied on Mary's treatment. The woman put me on hold twice and after 22 minutes, the recording came on if I would like to take the survey. I was now disconnected.

When I called back, I was now helped after again following the prompts and explained that because there was other procedures done during the sonogram and MRI, it was billed as another treatment. Something Mary, (like I so often hear) either wasn't told or didn't understand at the time her billing was discussed (or maybe it was never discussed). I have been with enough patients before their surgery or procedures to know that there is a good chance there was no confirmation that the patient understood or was told the details about how the billing would be handled. Her insurance would pay for the radiology treatment but less for the procedures that went with it. Unlike anesthesiology and surgery, this was billed in one lump sum.

I thought I would try to speak to someone at the cancer center where the billing was done and ask how this might be handled to help her. Here is how that played out:

I called cancer center and was told by the woman answering (after following prompts), that the woman could not help me, so I asked for a supervisor who would handle billing. I was transferred to someone who called me "hon" and "honey" who could not find a record of the patient. "Are you a supervisor?" I asked . She said she was not and that I reached the chemotherapy department. She suggested I call radiology and gave me the number. After following the computer prompts, that were plentiful, on 2 occasions the phone said "goodbye". I may not have been fast enough pressing 1, 2, 3, 4 or 5.

When I got a human, she too could find nothing on the patient and suggested I contact another office. I called and after following the computerized instructional prompts to press 1 or 2 and 1 or 2 or 3 or 4 and then 1 or 2, a recording repeated every minute or so that there was a high call volume and I could wait or "visit" them on line at their website. I waited.

When finally connected, (the waiting gave me time to write up these detailed notes) this woman could find no record of the patient owing any money. She said the balance was zero. So I asked about the department I called and she said it was the doctors billing department. She handles doctors billing. When I told her this was not about a doctors bill, she gave me another number to the business office. The number was different but something told me the next call was the same place, different department.

After following the prompts to the business office, which was also called customer service, I was again told that this patient has a zero balance. This person suggested I try another number since it may actually be a doctors bill. I didn't know why I called another doctors billing department. When I tried the doctors billing office and followed the prompts, I was told there was no patient information, but some doctors do their own billing. If this were the case, then they would not have any information about her bills there.

She suggested I try another number, which was the same number I started with. Each call started with the patient's information, address, phone number etc. Exhausting even though I am not emotionally involved.

This whole scenario took just over an hour plus the 30 minutes on the phone with her insurance company and it got me no where. I just could not imagine an emotional patient, facing a life changing health condition such as cancer having to make these calls.

An hour later I called the Westin Hotel reservations and one person was able to make me a reservation anywhere in the country, plus if I had a problem with billing, the Westin Hotel reservations operator would put in a request for someone to call me back.

Maybe we need to follow that prompt in healthcare..........Vacationing people get to speak to a person while the sick get machines and prompts.