All the caregiving professionals I know in New York have been very busy with people calling 911 only to find out that they are having some kind of panic attack or being returned home without a diagnosis. Caregivers tell me that they can’t believe how nasty their patients have become or how needy. Is it the long winter or is it something more? Here, Barry Pankhurst offered to allow us to reprint his article about how it feels to him when the effect known as Sundowning comes on.
I can’t tell you how many of my clients are relieved when I mention that they may be suffering from Sundowning. They thought it was something that was only happening to them or that they must have cancer or a heart attack coming on. Barry accepts his Sundowning as being related to his dementia, but many of my clients don’t have any other symptoms of dementia or Alzheimer’s, they just go through the Sundowning. One lady, who is now in a psychiatric unit of a nursing home, says she feels like she is on fire. The next day she will say that she and everything around her is wet. She is inconsolable, which led to her requiring restraints.
Another client has almost the same symptoms as Barry, but they happen only in the morning. I have a very hard time explaining it to his psychiatrist who only sees him in the middle of the day when he’s at his best and has forgotten the recurring nature of his symptoms. Doctors rarely if ever discuss Sundowning with patients or caregivers, the most I’ve seen is a shake of the head.
Thank you Barry, for sharing this and for being so painfully honest.
Faces of Dementia
Some time ago on another website called ‘Talking Point’ I was asked the following question and I quote:
(Barry could you explain how you feel whilst Sundowning, does anything trigger it or does it just happen like clockwork?)
The easy answer would have been to just to say yes (It happens like clockwork) but I think the subject is far more complex than that as it seems that Sundowning as it’s called can affect people with our illness at different times of the day, “in fact” a similar thing can also happen at the beginning of the day when the sun is rising, although the latter part of the day when the sun is setting seems to be the most significant time…
One thing I should explain is that here in Indonesia and some other parts of ‘Asia Sun Rise and Sunset’ occurs at about the same time everyday of the year, by 6am its broad daylight and by 6pm it’s getting dark unlike European countries when during the summer you have extended hours of sunlight from 4am-9pm which in itself could have some significance as to when a person starts to feel the effects of Sundowning?
But how does it make me feel: I think the best way I could describe it is to say that it causes a similar feeling that I can still remember after having had a nervous breakdown some years ago that at the time resulted in extremely deep depression.
For me it normally starts at around 3-4pm when I start to feel very lethargic and just seem to be wandering around the house utterly lost in my own world mumbling to myself or sitting in a chair drifting into daydreams (in fact my dear wife Sumi says she can now tell what time of day it is without looking at the clock) I fell as though the end of day is trying to drain every last bit of energy out of my body, all my limbs become extremely weak and I find it very difficult even to go for our walk but still go in a effort to ward off the Sundowning effect, I can become incredibly short tempered and loose all sense of rationality and sometimes become verbally aggressive and argumentative, you feel as though the whole world is against you and that whatever you say or do is wrong so I don’t like to be posed any questions at this time of day not even (what do you want for dinner) and I certainly don’t like to have any visitors at this time not unless they want their heads bitten off as my mind is at a total loss of any comprehension, all I want is to have my dear wife by my side but she now realizes that it’s best to talk to me very soothingly and I’m sure that she now just agrees with everything I say in an effort to keep me calm and also makes sure the house is kept peaceful without any excessive noise to further confuse my mind (Bless her as she has so much patients with me) as I start to feel as though I have the whole weight of the world’s problems upon my shoulders and everything becomes a effort so much so that my wife now has to help me bathe and get dressed as I’m so agitated and shaky…
So there is nothing that actually triggers the Sundowning apart from the setting of the sun as it descends towards the horizon which makes it feel as though its automatically starting by itself, but if it’s not handled with sensitivity then there could be untoward repercussions, also I should add that not everyday is the same as some can be worse than others and sometimes I can go for a few days without feeling any effects of Sundowning and the other strange thing is that even the weather conditions at the end of day can have some influence if its overcast I feel much better and responsive but if it’s a strong bright crimson sunset that we get out here then the draining affect starts much quicker, in fact, I get much the same affect when I go into a shop that has to brighter a neon, or flashing lighting…
Read of the reality when I’m Sundowning
This is written on actuality not supposition from when my dear wife Sumi and I went for our end of day walk it’s not just a one off situation or sensation for me it’s more of an occurrence day after day that totally shatters me!
It was just 4-30pm as the sun starts descending over the horizon when lethargy takes a grasp of me and the Sundowning affect ‘tolls the knell of my end of day’ so I’m writing this down trying to express the depths of my ‘true inner feelings’ at that exact moment in time…
My whole body aches as the muscles try to maintain some equilibrium, and as we go for our walk every faltering step I take being like that of wearing shoes made from concrete that’s slowly setting and intensifying in weight, which makes me weigh heavily on my walking stick and Sumi’s arm otherwise I feel I could just pass out from utter exhaustion as my mind is consumed in a dense obscure cloud of disorientation and bewilderment, my limbs are trembling so much I don’t know what to do with them to ease the tremor… my vision has become blurred as my eyes feel heavy wanting to sleep and escape from the sun’s setting draining sensation, so Sumi tries talking to me to take my mind of the horizon as my eyes have become mesmerized following the sun’s descent and harsh rays… but I can’t comprehend what she’s saying, I try to reply but any form of words and speech are held tight within me so all I do is mumble something incoherent which then makes me frustrated and I become really irritated and tetchy with her, the slightest little noise is more like thunderbolts slamming into my ears and making me very anxious and extremely jumpy…
The further the sun sinks away… the further I go into despair of doom and gloom… and sometimes it gets me to the point of saying to Sumi: (I’ve had enough of this, maybe it would be better if it all ended now, and I did not wake up again) as I can almost sense death waiting round the corner taunting me when in this daily living hell of Sundowning, I can see the tears glistening and running down her cheeks as she holds on more tightly to me saying ‘please don’t speak like that’ but I seem to be oblivious to her own anguish as my whole being is so distraught by the time of day that I just want it to come to an end…
As I said those where my exact feelings made from notes one evening, but as I type them out the next morning I had little recollection of that moment in time… it’s as if it never existed… as this morning I feel a completely different person still full of determination and the spirit of fighting this terrible illness, but when Sundowning strikes it takes us into a completely different world of anxiety within dementia…
I will be very interested to know what others people’s observations are with Sundowning as it’s another part of the illness that doesn’t affect us all in the same way.
I am a Bzz Agent, http://bzzagent.com. I get free samples of things to try. I’ve been a member for a long time and love all the things I get, especially makeup. When I saw this campaign for a Cold Relief medication that is specially made for people with high blood pressure, I thought I had better try it. I do worry about side effects from over the counter medications.
Just in time for cold and flu season, I received my sample of Coricidin HBP http://www.coricidinhbp.com/coricidin/home/index.jspa
I have Coupons for $3 off if anyone is interested.
Governor Cuomo wants to hear your comments and suggestions. Attend this meeting and give your or your organization’s statement in regards to the future of health care.
STATE OF NEW YORK
SPECIAL PUBLIC HEALTH AND HEALTH PLANNING COUNCIL
January 7, 2014
AT THE FOLLOWING LOCATIONS
• New York State Department of Health Offices, Corning Tower, 14th Floor, CR#1,
Albany, NY 12237
• New York State Department of Health Offices at 90 Church Street, 4th Floor,
Rooms 4A & 4B, NYC
• New York State Department of Health Offices at 584 Delaware Avenue, 3rd
Floor Training Video Conference Room, Buffalo, NY 14202
• New York State Department of Health Offices, Triangle Building, 335 East Main Street,
Rochester 2nd Floor, NY 14604
I. INTRODUCTION OF OBSERVERS
Dr. William Streck, Chairman
II. HEALTH PLANNING COMMITTEE REPORT
John Rugge, M.D., Chair
Recommendations for Consideration and Vote:
A. Limited Services Clinics (Retail Clinics)
B. Urgent Care
C. Freestanding Emergency Departments
D. Non-Hospital Surgery – Ambulatory Surgery Centers and Office Based Surgery
E. Upgraded Diagnostic and Treatment Centers
This month has been festive, with lots of good wishes for the next year. All I can think of is that it is better than last year, when Sandy damage still had many of our clients and friends without. It is great to see the lights back on, both Menorah and Christmas decorations. This year, I took over as Treasurer for the Senior Umbrella Network of Nassau. It was a true pleasure meeting and talking to each member of this group of professionals. I also welcomed a new co-chair for the SUN Advocacy Committee, Rick Scher, Chiropractor and owner of Care Connection Home Care. The Committee planned and executed a Safe Driving program and chose Avoiding Senior Scams as next year’s project. Our first meeting is scheduled for January 14th, and all SUN members are invited to attend. Call me if you are interested at 347-965-9222.
This week I want us to stop for a moment and take stock in where we are , what we are doing and what our plans are for the rest of this coming week/year. Regardless of your religious beliefs or unbelief’s, this week the world will celebrate the Christmas holiday and that will have an effect on each of us in one way or another, whether we personally celebrate the holiday or not. Based on this simple fact, I want us each to take a long hard look at what we have planned and make sure that we do something that will help us in our businesses and in our personal lives as well. That thing that I am going to focus on for my tip this week is the word “Priority”.
This means looking at and picking the most important things to do with our own personal time, with our families, friends and ultimately with our businesses as we prepare to close out the year. To help us focus on what I mean here I want us to look back in history at a story that most of us know, or have heard something about because it relates to the Christmas story and the birth of Jesus. I am using this story because it fits so well based on the season and upcoming holiday and it has and provides great metaphors for the points I want to make for this week’s tip of the week.
We will pick up the story as it starts in Bethlehem where Mary and Joseph are traveling and she is pregnant and ready to deliver her child. Since there were many who were traveling like them to come back to where they were from and register for a census for the government, when it came time to stop for the evening they hadn’t called ahead and made reservations like we can do today at the drop of a hat on our smart phones or tablets. Instead, they just stopped where they could and tried to get a room at the inn that they came across. Here is where I think the metaphors for my points start to really show up and I want each of you to consider how this may be affecting you right now based on some decision you may have made, or are making for tomorrow’s day in the office. Here is point number one:
Unfortunately, most people are living their lives in such a tiny, insignificant way because they’ve filled their lives with meaningless activity. We continue to do the same things over and over again each and every day, sometimes without regard for why we do them, or we just do them out of convenience, instead of making sure that we are doing the “right thing” by changing and potentially creating waves. Case in point would be the the innkeeper who didn’t make room for Jesus on the first Christmas. I’m sure he was super busy with a full Inn that was already loaded to the brim. He had food to make, linens to take care of, kids probably running around all over the place and a little out of control, not to mention those who were still showing up at his door asking for space that he didn’t have. I think most of us would have reacted the same way that he did when Joseph and Mary showed up at his door at night and wanted a place to stay, but instead, he sent them out to the stable with the animals and didn’t prioritize his choice. His actions didn’t keep Jesus from being born. His actions didn’t stop God’s purpose in history. It just hurt the innkeeper. He missed the privilege of housing the Son of God at his birth. Do you think that he might have responded differently if he knew that the baby boy that was going to be born in his stable that night would change history forever? In fact, that is why they call it “HisStory”! From there on, we name time as either BC or AC and the world has never been the same from a recording stand point again. I would think that looking back he would have given up his own room had he made a different priority out of the opportunity that presented at his door that night. From a marketing stand point, don’t you think he would have liked to have said that “Jesus was born and slept here in this bed in this room” ? Do you think any of us have ever made a “busy’ or “convenient” mistake like that in our lives?
So my question for each of us this week is how can each of us not repeat a mistake like this and miss an opportunity in our lives that might have an impact on the rest of the world? As each of us gets busy with work, family and friends, will we get so caught up in everything else, that we miss a chance to share the full story of Chiropractic with a patient who might become the one who refers hundreds of other patients to our practice? Will we be so caught up in the candy and cookies that our patients bring in to us that we miss those in our community that are going without basic food to eat, let alone preparing or having any food for the holiday? Are we going to be celebrating gifts of new clothes and things to wear and enjoy while others might need a coat or socks just to keep them warm at night? I know we can’t change the whole world or the problems of the whole world, but I think if each of us focuses just a little better this week on things that can and do really matter, we can make some changes in our own communities that can change our practices and our business model forever! With that in mind, here is what I suggest you do:
Follow Albert Einstein’s principle of simplicity.
“If you can’t explain it to a six year old, you don’t understand it yourself.” – Albert Einstein
The more complicated you have to make something seem, the more you do not understand the inner workings of it. Think about the best teachers that you have had in your life. Did they make even the most complicated topics full of vocabulary that you did not understand, or did they make it easier to understand by simplifying? This week, keep Chiropractic as simple as you can when you share and explain it to others and watch how much easier it is for them to then refer those they know in for care. Check out our new Report of Findings video online at www.backtalksystems.com as you share the message of chiropractic with those who need the unique services that you offer.
This week I want you to look at everything you are doing with your marketing plans and be as generous as you can be. I know that certain rules and regulations will apply based on the types of patients that you care for and the laws of your region where you practice, but maybe you can give out a gift card that offers the gift of a complimentary first visit for your patients to share with someone that they have been trying to get in to see you. You can put an expiration date on it, say within the next 2-4 weeks so they don’t delay and they go out NOW and offer a reason for someone to get in and try your services before they wait any longer and continue suffering the effects of ill health. Maybe it’s a two for one deal on a certain day that you are trying to build up. Or maybe you can offer a signed book, a customized calendar for next year, or an complimentary update exam that they may need to resume care again at your office and that cost is keeping them away. Check with your local licensing board to make sure what ever type of offer you make is legal and won’t get you into trouble, but be generous with your staff and with your patients during this holiday season and show them that you are a person who cares enough about them and those they know and care about as well. You can offer the gift of access to your services in a way that helps them start what can become a lifestyle choice for better health during this holiday season!
I wish each of you a wonderful holiday season, regardless of what or how you celebrate and I hope we get the chance to continue serving you in the coming years. If there is anything we can do to help, just give us a call toll free at 800-937-3113 or visit BackTalkSystems.com
Very good article from the times, with a response from Don McCanne, Physician for a National Health Plan.
The New York Times Magazine
October 30, 2013
The President Wants You to Get Rich on Obamacare
By Adam Davidson
(Tom) Scully was scheduled to deliver the keynote address at an event hosted by the Potomac Research Group, a Beltway firm that advises large investors on government policy (tag line: “Washington to Wall Street”).
When Scully finally began his speech, he noted that the prevailing narrative among Republicans — assuming that many in the room were, like him, Republican — was incorrect. “(Obamacare) is not a government takeover of medicine,” he told the crowd. “It’s the privatization of health care.”
Scully then segued to his main point, one he has been making in similarly handsome dining rooms across the country: No matter what investors thought about Obamacare politically — and surely many there did not think much of it — the law was going to make some people very rich.
A couple of years ago, Scully identified his best bet. NaviHealth, the company he co-founded, is designed to streamline an enormous but often overlooked corner of the health care market that, many studies conclude, is the most financially wasteful: post-acute care, or the treatment of patients (mostly seniors) after hospitalization for surgery or serious illness.
Scully has a simple way of describing what NaviHealth — and much of the Affordable Care Act — brings to medicine. “It’s called capitalism,” he told me. “Which doesn’t exist in health care, really.”
In 2001, after George W. Bush appointed Scully the administrator of what would soon be known as the Centers for Medicare and Medicaid Services, he at last began to implement his ideas. Scully focused on designing and executing Medicare Part D, which opened one corner of government-provided health care — pharmaceuticals — to market forces. This created a new role for a previously relatively obscure business, the pharmacy benefit manager, or P.B.M., which streamlined prescription-drug services. Express Scripts, a once modest Midwestern company, used economies of scale to lead the effort in shifting seniors from expensive name-brand drugs into generics. According to Fortune, it is now the 24th-largest company in America.
By the time Medicare Part D went into effect in 2006, Scully, who was by then in the private sector, put his theory to the test. He invested in a smaller P.B.M., MemberHealth, which grew, in three years, from $6 million in revenue to $1.2 billion. “It was a hockey stick,” he recalls. “It took off like a rocket.” When the A.C.A. was near passage, Scully hoped to repeat the success. Once he and his partners at Welsh, Carson realized no one else had seen the potential in post-acute care, he thought he had another MemberHealth on his hands. “That’s what I expected with NaviHealth,” he told me. “I felt the same way: we would take off like a rocket.”
On the morning that Congress finalized the deal that would reopen the government and defeat — for a few weeks, at least — the latest Republican effort to derail Obamacare, I visited Scully in his New York office. Scully then began a set speech I had heard many times about how Republicans don’t understand the new health care law, that it’s actually more, not less, capitalistic than anything that came before.
Whether all this money flowing from Washington to Wall Street will benefit the rest of us is another question. Glenn Hubbard, the pre-eminent economist who helped devise George H. W. Bush’s health plan with Scully, told me that the cost of the A.C.A. will far outpace any possible efficiencies. Dean Baker, an economist at the progressive Center for Economic and Policy Research, told me that a government-run single-payer plan would be far more beneficial.
Comment: Former CMS administrator Thomas Scully has been a major player in injecting more capitalism into health care. This article describes his mindset, including the fact that he intends to get his share of the mega-wealth that health care privatization is creating.
Look at some of the trends:
* Medicare + Choice was established to allow private insurers to compete with Medicare with the goal of eventually transforming our public Medicare program into a market of private health plans.
* When the insurers couldn’t compete, Medicare + Choice was replaced with Medicare Advantage – a scheme designed to overpay private insurers by 14% in order to give them an “advantage” in the Medicare marketplace – with the intent of eventually displacing traditional Medicare.
* The Medicare Part D drug plan was designed to use private pharmacy benefit managers – diverting a massive amount of taxpayer funds to the capitalists, while prohibiting government negotiation of fair drug prices.
* The architects of the Affordable Care Act rejected a government single-payer solution and set up exchanges of private insurance plans that would siphon off more taxpayer dollars to pay for the private sector’s wasteful administrative excesses.
* Although the widely discussed “public option” would have had little impact since it would not have changed our basic, fragmented health financing infrastructure, nevertheless, even it was rejected as allowing too much of a government role in a health insurance market that the pro-market capitalists wanted to control completely.
* As a token tossed to the public option advocates, co-ops were authorized in the Affordable Care Act. These organizations – to be managed by representatives of the patients – were poisoned by a model that saddled them with massive intolerable debt service that would make it impossible to compete with the private insurers, not to mention that they are prohibited from marketing their product to the public. Competition is fine when the private sector is given unfair advantages over government programs, but, in the minds of these capitalists, it is unfair to allow a government or even quasi-government program to compete against the private sector. The government cheats by unfairly providing greater efficiency and value. Medicare’s administrative costs are 1.4% whereas the Affordable Care Act grants private insurers 15% to 20% administrative costs including profits.
* The Affordable Care Act also gave a great boost to consumer-directed health care – a concept of expanding the role of marketplace decisions in the purchasing of health care. By establishing a low actuarial value in the benchmark plans in the insurance exchanges – the patient pays a greater percentage of health care costs out of pocket primarily through high deductibles – much needed regulatory oversight is being replaced with the flawed theory that price decisions in the marketplace will bring health care costs under control.
* Under the false theory that government austerity measures are required to stimulate a thriving market by limiting taxation, Medicare and Social Security remain under threat by those who would privatize these programs through measures such as Medicare vouchers.
We need to understand what Scully is trying to say: The law is going to make some people very rich. Is that what we what from the most expensive and most dysfunctional health care system of all wealthy nations? We have been warned.
Dean Baker got only one line in this very long article: a government-run single-payer plan would be far more beneficial. That should be our take-home message.”
And this from the past, to see that this was always the plan, not just from Scully, but from all of the insurance industry.
CMS Administrator Tom Scully Announces Resignation
Thursday, December 4, 2003
CMS Administrator Tom Scully on Wednesday confirmed that he will resign Dec. 15 after President Bush has signed the Medicare bill (HR 1) into law, the AP/Boston Globe reports. Scully, who has headed CMS for the past three years, said that he will most likely take a job at one of five investment or law firms that have offered him a position as an adviser on Medicare legislation (Sherman, AP/Boston Globe, 12/4). Scully could earn as much as five times his current $134,000 annual salary in the private sector. Scully said that he decided to leave the agency in May for personal reasons, but Bush administration officials requested that he remain at CMS to work on the Medicare bill. Scully agreed and received an ethics waiver from HHS that allowed him to work on the Medicare bill and negotiate with potential new employers at the same time (California Healthline, 12/3). Scully said in an interview Wednesday, “I’m thrilled I stuck around to see it through. It’s done.” However, several opponents of the Medicare bill said that Scully’s conversations with potential employers during the bill’s negotiations “reinforced” perceptions that the Bush administration “favors insurers and drug companies over seniors,” the AP/Globe reports. David Sirota, spokesperson for the Center for American Progress, said, “Seniors have a right to know why a White House bill that forks over billions to the HMOs and drug industries was written by a person who was apparently pursuing employment with those same industries.” According to the AP/Globe, Scully said that the firms had been “courting” him for months (AP/Boston Globe, 12/4). Potential replacements for Scully include Leslie Norwalk, acting deputy administrator of CMS; Peter Urbanowicz, deputy general counsel for HHS; and William Winkenwerder, assistant secretary of health at the Department of Defense (California Healthline, 12/3).
Mathew Taber was kind enough to send me these screen shots of the sign in process for the federal exchange. Check it out and let me know if you saved money.
I was not qualified for a subsidy under the NYS Exchange. http://www.healthbenefitexchange.ny.gov/
I didn’t have any trouble getting into the site, even from my phone. However, it was pretty disappointing to see the high deductibles and low coverage, especially for services I and my clients use like Chiropractic, Dentistry and Physical Therapy.
The TogetherRX web site has long been a resource for people who do not have health insurance to get access to prescription drugs at discount prices. Their web site says this about who they are:
With Together Rx Access®, individuals and families without prescription drug coverage can gain access to immediate savings on hundreds of brand-name and generic prescription products at their neighborhood pharmacies. Through this website, we also connect you with resources about the Health Insurance Marketplace, the Affordable Care Act, individual pharmaceutical company patient assistance programs, and other patient assistance resources.
Right under the promo is this notice of why you will no longer have access to this program.
IMPORTANT PROGRAM INFORMATION
Together Rx Access is ending February 28, 2014.
Together Rx Access has conducted a thorough review of our cardholders’ needs and the ability of the Program to meet these needs going forward. Based on that review, we have determined that individuals and families who need help obtaining their prescription medicines may be better served by the health coverage options available through the Health Insurance Marketplace, expanded Medicaid programs in select states, or by individual company prescription assistance programs. As a result, the Together Rx Access Program will close at the end of the year.
Eligible individuals can enroll in our prescription savings program until December 31, 2013. To help our cardholders transition to other programs, they can continue to use their Together Rx Access Card at participating pharmacies until February 28, 2014. After this day, savings will no longer be available with the Together Rx Access Card.
For more information go to http://www.togetherrxaccess.com/
Here is the link to the NYS Health Exchange, where you will find information about which health plans are available and what they cover. You will also need to use the exchange if you have previously been covered by a Healthy NY Plan. http://info.nystateofhealth.ny.gov/
These summaries show the benefits or health services that are covered by “standard” health plans offered in NY State of Health. Standard plans must have 10 Essential Health Benefits required by NY State of Health.
Summaries also show the amount you may pay (deductibles, copays) for those services. Standard plans are available at several levels: Bronze; Silver; Gold and Platinum. Certain New Yorkers may choose from these levels: Silver-Cost Sharing Reduction; Catastrophic; and American Indian/Alaskan Indian products.
Use these summaries along with the Tax Credit and Premium Estimator to get an idea of your total costs and benefits.
I was just finishing a long day, having brought my client, age 72 to ECT, stopping at the drugstore and then going out to dinner with her. Everything was going great. The doctors had just reduced her shock treatments from twice a week to once a week and she was getting used to her new memory assisted living residence.
Just the week before, I had taken her to visit with another client, who was in a nursing home. It was disturbing to see someone who was physically fit, but who didn’t remember that her children were grown adults, compared to someone else who was in a wheel chair but had no signs of dementia. The person in the nursing home, age 68 was in a wheelchair since an accident injured her spine about 10 years ago. She was a former art teacher and continued to follow the museums and the opera. Because she required transfer by Hoyer lift, she had spent down her savings to pay for in-home aides. Now she was waiting almost a year to go back home, while the paperwork went through the Medicaid process.
Then, just as I was ready to get in the car, I received a call from a hospital saying that this other client, the one from the nursing home was being admitted to the CCU and could I come right away. This was about 9PM and I hate to drive in the dark, but I was the Health Care Agent and they needed someone to contact about her medical history. I had never been in this hospital, a little community medical center that was close to the nursing home. Glen Cove Hospital was easy to get to, and the emergency room entrance was right by the free parking. I ran in only to see my client being hooked up to all manor of tubes and machines.
I’m writing about this because most of the articles I see about caregiving refer to people in their 90′s, when you can understand that they will be near the end of life. Even in my past experience, most of the people for whom I am called in to produce a DNR or Do not Resuscitate Order are unconscious and therefore I am called upon to use the Health Care Proxy.
But, in this case, the patient was alert, albeit very frightened. The doctors did all they could for the next few days but finally told me that a decision would have to be made. Either the patient would require a tracheostomy and would remain on a ventilator. This would mean that she would not be able to go home, instead she would remain in the nursing home for the rest of her life. She would also require a feeding tube and would no longer be able to speak. Even though the ethics committee doctor tried to talk about the possibility that some people can get off the ventilator, the pulmonologist was kind enough to explain that this usually only happens to younger, healthier people. The reality was, that nothing else could be done to save this patient’s life, other than to give her the kind of life most people dread.
This wasn’t the first time that I was there when a patient had to decide if death was preferable to living without any enjoyment. But, this was the youngest person, someone who only a week before was planning on going home, someone who didn’t suffer from any other life threatening disease. No cancer, no heart problems. She had not written out an advanced directive to talk about her desire for or against being on a respirator, because she didn’t suffer from any illness. The doctors couldn’t explain why her body was just shutting down. A sweet nurse came in and gave the patient a sedative. She said I could leave and come back the next day, when the patient was less anxious.
I was given a traffic ticket the following morning, for running a red light on my way to the hospital. Once before during this hospitalization, the patient had been able to be weaned from the ventilator, and I hoped that I would find her sitting up, a miracle. But, no. The patient was still hooked up to all manor of tubes, although now her eyes were fully alert. She asked for a pad and pen. With the nurse, the doctors and myself at her bedside, the patient wrote out her directions. “If nothing else can be done to cure me and let me go home as I was, then I do not want to have the procedure.”
Over the next week, I came to think of this person as the bravest person I knew. She talked to me about her life and the things she cared about. She did not have any children, which was how I became her health agent and POA. She asked me to go to her apartment and get her will. When I returned with the will, she went over each line to explain to me why she had made each provision. We laughed about cheating death, since the tubes had been removed and so far, she was still alive. She told me that she was satisfied with her life. Then came the morning when the nurses called me at 6 am to say that the patient had passed peacefully during the night. I went to her room to say my final goodbye and found her watching TV and looking just as I had left her, only no longer breathing.
PUBLIC HEALTH AND HEALTH PLANNING COUNCIL
SPECIAL MEETING OF THE COMMITTEE ON HEALTH PLANNING
June 26, 2013 11:00 a.m.
Learn and Comment on the NYS Health Insurance Exchange
Donna Frescatore, Executive Director of the New York Health Benefit Exchange
with a panel discussion
Paul Eisenstat, Excellus BlueCross BlueShield
Paul Macielak, NY Health Plan Association
Pat Wang, Healthfirst
PUBLIC COMMENT ENCOURAGED! SPEAK NOW OR DON’T COMPLAIN LATER!