This is an abridged part of Chapter 1 of the book.
Handling the news from your doctor that you have a serious illness with no real cure.
Generally, the news that a person is nearing the end of their life is broken to them by a physician who diagnosed a serious medical problem. But, when it comes to breaking bad news, even the best doctors have difficulty imparting this information as well as they’d like. Doctors are trained to save lives and fix problems so it follows that they don’t like to say they can’t fix something, and no one wants to be the one to deliver bad news. Yet, the reality is that they can’t fix end-of-life issues, because dying is the final act of living. Reality check - we are all mortal.
Despite the best efforts of physicians to say what they know and describe available options, the message is often confusing and unclear to the lay ear. They may use clinical terms we might not fully understand, let alone be able to appreciate the consequences of those terms. Sometimes they inject hope for a “miracle,” a cure, or a “bounce back” into the conversation. This injection of hope has two aspects—firstly, it is a way of them saying that there is a (small) chance something could happen that would act as a remedy of some sort, and secondly, it is a way of them making the task of delivering the news easier on everyone. Sadly, miracle cures are very infrequent.
False hopes can be detrimental because they can change the end-of-life goals and activity plans one might set if one knew the reality. Where this happens it may lead to a delay in doing things one really wants to do in this special and limited time, or even not getting to do those things at all. It can also lead to more treatment plans, which may be futile, increase discomfort while denying an opportunity to share time with family and friends, and potentially even hasten death rather than prolong life.
There is also the clarity of the message. Is the message, delivered from the giver to the receiver, received the way the giver intended and hoped? Did the receiver of the message really understand and receive the essential essence of the message the way the giver intended it to be understood? Often the message is interpreted into something different from what was intended because of personal bias or cultural differences. We know that we tend to hear what we want to hear. End-of-life messages can be delivered with nuances that can limit clarity.
Clarity of message is critical when you are confronted with the news that you have a terminal condition and are nearing the end of your life. You will likely be somewhat in a state of shock. Many things may immediately rampage through your mind. After the first announcement of the news, disbelief may set in—you may react that, “this can’t be happening to me,” and block out some subsequent information.
In this first discussion, when the physician breaks the bad news, he or she will generally share any care options available. But at this point in time you are probably also thinking of the things you want to do, things you will miss, people you want to meet with, and what will be left undone. Why is this happening to me? Is there a miracle out there? What is the physician really saying? What will happen to me? With thoughts such as these, it is understandable that you may miss some part of the message, or grasp only a part of it—such as the slim hope for a miracle cure at the last moment. That would be something you would hope to hear.
Maybe you will be the one of the 1 percent who will beat this thing?
Generally, the bit of information grasped is the bit filled with the hope of the miracle, and the rest is pushed to the back of the mental process as hope takes over. Sometimes the message may be good news about one critical organ but very bad news about another. It is the ‘another’ that will have the terminal impact, but the good news is what is grasped by hope.
Physicians typically want to impart the news and leave, this is hard for them too. Palliative care, oncologists, hospice, or geriatric doctors will usually stay longer and help you better understand because this is part of what they do and they do it a lot and so understand patient needs in these discussions very well.
A Guide to Understanding the Essence of the Message.
The easiest way to clearly understand the message from the physician is to paraphrase it back to them as a question and ask them to confirm to you what they are saying. The best way to cut through the medical speak is to ask a simple question such as:
“If I were your father/mother/brother/sister, would you want me to enjoy these last days with family, free from medical interventions and under palliative care, or attempt the miracle interventions and care that you have said is an option?”
Or, you could ask:
“If this was you, or your spouse, what would you do?”
While such questions put the physician on the spot, the answer may be quite illuminating and is usually from their heart. It will really be helpful for you to hear what they would do if it were them.
Other ways to ask are:
“Can you please explain that to me again, in very simple terms, so I can come to grips with what you are saying and understand it fully?" or “How would I best explain this to my family?”
Other questions you can ask surround the disease you have, and the relative success that the doctor(s) has had with the options being proposed:
• How do patients really fare under these options?
• What is the anticipated life expectancy—both the best and worst cases?
• Will the suggested treatment prolong my life? By how long?
• How will the suggested treatment affect my quality of life?
Ask them what the percentage chances for some sort of recovery are for each of these treatments if they become necessary. If they don’t know, ask them to make an educated guess to help you decide. Ask what helped each of those who had the miracle recovery and whether their problems were similar to yours in severity and progress. Then ask what that recovery would be, if recovery were possible. Ask if this is irreversible, and will it entail suffering. Ask if your faculties and/or mobility will be impacted, and what level of cognition, pain, and mobility you can reasonably expect.
Recovery rates from most terminal diseases are very limited. You need this information so you are able to make a decision on the type, and level, of care you want, and of course what you don’t want. You need this information to plan and set goals for the rest of your life.
Also, ask what else you should know that has not been discussed that is important. Get all of the facts, not just some. Don’t hesitate to ask the question, “Is there anything else I should know, or if you were me receiving this news, what would you want to know?”
At this point you should now have a basic medical opinion, backed by clinical observations and data as to the medical problem, a probable prognosis, and an idea of the options available to you. If you didn’t ask the physician any of these things and after thinking about them you would like to know, call the physician back and ask.
As your Health Deteriorates
Most people will be aware of gradual decline in health even though there may be no clinical diagnosis. Indicators may include, but not be limited to, any or several of the following:
¥ Significant decline in activity of daily living (ADL). These include things such as dressing, eating, using the toilet, washing, etc.
¥ Complex tasks such as shopping, driving, cooking, doing finances are getting harder.
¥ Significant weight loss—10 percent or more over the past six months.
¥ Incontinence of bowel and bladder.
¥ Psychological incontinence. (Incontinence is usually understood in terms of elimination; however, it is also used for mental issues where one has little to no control over their psychological state).
¥ Physical difficulties.
¥ Unexplained pain.
¥ Recurrent/multiple infections.
¥ Multiple hospitalizations.
¥ Increased use of health services.
¥ Forgetfulness—forgetting why you do things, not just the occasional forgetting of something.
¥ Losing things.
¥ Physiological changes, lumps, pain, etc.
Sometimes, people know they are in decline and that they have limited time left. We all know our bodies and can sense when things are not right. Even though there is no clinical diagnosis of disease, it may be time to weigh your options and decide how best to spend the rest of your life.
Your Next steps
Now that you know there is an end of life for you in the not-too-distant future. You have an idea from a doctor on your recovery chances (usually expressed as best chances). You know whether this is irreversible or not. You know some of the options available to you. You have a sense of what limited time is available to you. How do you get started in planning what to do next?
What steps do you take next? The suggested sequence is as follows:
1. Understand your choices for care, both medical and practical, and reframe your life goals now that you know you have limited time.
2. Think about your personal goals and what you can do to attain them.
3. Focus on your life you have left and how to spend it, not on your death.
4. Have a discussion with your family and friends.
5. Determine needs of care: where, what, and from whom.
6. Take care of legal/financial issues.
7. Decide how you want to spend, and enjoy, your final days.
8. Reflect on your legacy.
9. Prepare for a family discussion to ensure that your end-of-life wishes are carried out.
10. Ensure you you have a health care proxy and executor you can trust.
This is an abridged version of Chapter 1 from my book Dying Well Prepared; Conversations and Choices for Terminal Patients.
Its getting close to Tax Time.
Taxation with Household Employees and Agency aides.
When hiring an outside professional to care for an older adult at home, families have two main options: Work with a home care agency, or hire an independent home health aide.
Find a Home Care Provider
Agencies usually handle the employer's side of the tax obligations for their employees, so hiring an aide through an agency typically means that you don't have to concern yourself with additional tax considerations. However, you do need to ask and have confirmation that this is indeed the case.
Hiring a home care aide who is not attached to an agency can have a significant impact on a tax bill. In these situations, the older adult and/or their family is typically regarded, for tax purposes, as the "household employer" of the independent aide. This means that this person is responsible for paying the employer's portion of their new employee's unemployment, Social Security and Medicare taxes.
Are you a "Household Employer?"
For tax purposes, the primary factor that determines whether a home health aide is considered your employee or a self-employed, independent contractor (independent contractors are responsible for their own employment taxes), is whether you dictate how he or she performs their work. You can give a list of things to do and requirements but not manage how they do them. Whereas a household employee will receive their instructions on how to care for the older adult from you or another member of the family.
Home health employees who aren't affiliated with an agency tend to fall into the household employee category. Exceptions are a spouse or child (under 21 years old) who are not considered employees for tax purposes even if they receive compensation for providing care.
Once you've determined that the person is categorized as a household employee, the first thing to do is ensure that he or she can legally work in the United States. Asking to see a prospective employee's Social Security card, or having them tell you their SS# are the simplest ways to determine this status.
Prior to the new employee starting work you need to have a Form I-9 (Employment Eligibility Verification) completed. Thisrequires the aide to produce documentation that proves their eligibility to work in the U.S. The form doesn't have to be formally filed with any government agency, but you, as the employer, need to keep it for your records, since the government can ask you to present the document as proof, at any time.
You'll also need to apply for an Employer Identification Number (EIN) so that you can remit taxes that you retain.
Tax Obligations of a Household Employer
The tax amount that you must contribute for an aide who is a household employee will vary, depending on which state you live in and how much you're paying them for their services.
It's vital that you maintain detailed accounts of all materials related to a home health aide's wages and taxes. You must keep a given year's employment tax records for at least four years after whichever is later: the due date of the return, or the date when the taxes were actually paid.
Each time you pay the aide, be sure to write down the date of the transaction, as well as the following:
Employee's wages, both cash (e.g. cash, check, money order, etc.) and noncash (e.g. food, clothing, lodging, etc.)
Federal income tax withheld
State employment tax withheld
Social security and Medicare tax withheld
Some Useful nformation Employment Taxes
Here are a few key components of the household employment tax process to keep in mind:
Household employers are not required to withhold federal income tax for an employee, but they can if the household employee requests it. If an employee wishes you to withhold their income tax amount from their paycheck, simply have them fill out a Form W-4 (Employee's Withholding Allowance Certificate), which you will then file with the IRS on their behalf. The W4 identifies deductions and this helps determine the amount of taxes to be withheld. Just remember, if you withhold their federal income tax, you are responsible for paying the full amount on Tax Day to the taxing authority. Penalties for not doing so can be severe. Additionally, you have to inform the household employee about the Earned Income Tax Credit (EITC), which may reduce the amount that a low-income earner owes in taxes.
Employer/Employee Tax Obligations
If you pay an household employee more than $1,900 in cash wages during the tax year, then the IRS will consider you on the hook for the entire Medicare and Social Security tax amount for their employment, which is 15.3 percent of what you paid them. In a typical employment situation, the two parties split this cost down the middle, with the employer paying 7.65 percent (6.2 percent for Social Security and 1.45 for Medicare) out of their own pocket and withholding the remaining 7.65 percent from their employee's wages.
Calculating Medicare Tax
Once the $1,900 threshold is met, all additional wages are taken into consideration when calculating the dollar amount of an employee's Medicare taxes. The Medicare tax amount will be whatever the aide's total wage amount was for the year, multiplied by .0145.
Calculating Social Security Tax
Social Security taxes for a household employee are only eligible to be taxed up to, and are capped at $118,500. The Social Security tax amount will be all wages up to the capped amount, multiplied by .062.
Calculating Unemployment Tax
If you pay an aide more than $1,000 during any quarter of the tax year, then you also have the obligation to cover the six percent federal unemployment tax amount (FUTA. Once the $1,000 in a single quarter qualification is met, a six percent FUTA tax is applied to wages up to $7,000.
Special Rules for State Taxes
Certain states also require household employers to pay a state unemployment tax as well. Information on state unemployment taxes can be found by contacting your state's unemployment agency, using this contact list for State UI Tax Information and Assistance.
Important Dates for Household Employers
Paying taxes as a household employer requires you to fill out and file Schedule H along with your federal income tax return (Form 1040, 1040NR, 1040-SS or 1041), and pay the tax amount due by April 8, 2016.
The following timetable will help you keep track of the important tax dates for submitting forms for the 2015 tax year:
February 1, 2016 -- Submit to your employee Copies B, C and 2 of Form W-2 (Wage and Tax Statement).
February 29, 2016 -- Submit Copy A of Form W-2 with form W-3 to the Social Security Administration (SSA)
April 8, 2016 -- File Schedule H (Form 1040) Household Employment Taxes. And of course, file your own personal income tax return, if necessary Form 1040, 1040NR, 1040-SS or 1041)
IRS Publication 926 (Household Employer's Tax Guide) offers more in-depth information about filing taxes as a household employer, and contains a tax withholding table to help you calculate how much you and your employee will owe in taxes.
NOTE: The above is meant only as a guide and because the author is not an accountant (even though he studied accounting). As you will now appreciate, this is complex so you should consult a practicing accountant for advice in setting up to be a Household Employer.
The importance of having an advocate.
As an ombudsman with elder services I am an advocate for the residents. I know an ombudsman is meant to be totally neutral but the reality is that I work for the interests of the residents. Yet, I am fair also with a facility because sometimes they are also in the right, legally, morally and ethically, and its in the interests of all that the ‘right thing’ is done. Most states have an ombudsman program for nursing homes/skilled nursing facilities/long term care /rest homes. These ombudsmen typically report through their local elder services back to the state.
Assisted Living and Independent living facilities are not, in most cases, participants in the state administered ombudsman program, however, some states do have a nominal service.
Nowadays, when we think of an advocate in the US our thoughts go towards the Affordable Care Act and the advocates who work to ensure people sign on to health insurance programs. But every person, patient in a hospital or resident in a nursing home should have an advocate.
The advocate represents and fights for the patient’s rights and needs regardless of whether a healthcare proxy has been invoked or not. This is the person who communicates these rights and needs to healthcare professionals to ensure the patient gets the care to which they are entitled and deserve. It can be a child, a sibling, a relative or a friend, but this is a role of some responsibility.
The function of an advocate:
The speak for the patient, on their behalf on all issues relating to their care.
To attend ‘family’ meetings and articulate the patient’s position on all matters.
To provide support for the patient as and when needed.
To ensure the patient’s best interests are preserved.
To be there for the patient, whenever needed.
The advocate will engage on all matters with healthcare providers and facilities, so should be a person of trust who is very familiar with the patient. The advocate needs to know what the patient wants for their care. This is not a task for someone who is shy and submissive because it involves being able to take a stand for the patient.
Some thoughts on reducing fall risk in the home.
Falls are the leading cause of death, injury and hospital admissions for the elderly population and comprise a large number of people recovering in nursing homes. In people who are facing a steady decline in health and possibly also cognition at the end of life, falls can be catastrophic leading to an earlier death than would otherwise be the case. As we are looking to be ‘well prepared’, then it makes sense to do what we can to reduce the potential for any unnecessary injury that could complicate or even accelerate any terminal health condition.
Statistically, about 1 in every 3 elders will suffer at least one fall and this metric is directly transferrable to those with terminal health problems. Slips, trips and falls can, to a large part, be avoided if you are aware of their causes. However, as long as people stand upright and move about they are still subject to falling and suffering injury. Causes of falls can include one or more of the following:
Physical strength and balance reduction in the elders. As we age so our physical strength diminishes unless we take steps (exercise) to reduce the effect and our balance can also suffer.
Diminished vision and various eyesight issues (presbyopia, etc.) can impact us as we age. Also either not wearing our glasses, or not having the right prescription in our glasses, can result in a fall.
Medications. Many seniors take multiple medications and any of these may increase the risk of a fall resulting.
Various health problems can increase fall risk by impairing physical mobility or impairing our comprehension of the problems faced with ambulation slip / trip hazards such as throw rugs, clutter, extension cords, etc., may contribute to falls.
Health problems can impact our perceptions and physical capabilities leading to falls.
Impatience in not asking for or waiting for assistance to arise from chair or bed for any reason. Along with this goes a sense that we don’t need help or that we can do it on our own.
Poor lighting in the home so that trip / slip hazards cannot be readily identified.
Lack of fall prevention assistive devices in the home.
Setting up a home to reduce fall risk:
Some of the things you can do to reduce the potential for fall risk include:
Install grab bars or handrails in the shower or bath and install push up handles for the toilet. Note the grab bars should be screwed into a solid part of the wall – suction cups grab bars are not advised as they can release. Grab bars are meant to steady someone, not be a device to haul yourself up on.
Get bed rails that can be used as a support when arising from the bed and also reduce the problem of someone rolling out of bed. These should be well fastened, usually going under the mattress as the simple ones that strap on may not be adequate.
Apply no-stick tape, or no-slip coatings onto shower recess floor and/or tub. Get rid of the loose bath mat.
Install a toilet riser seat onto the toilet. These should be of the type that bolt through under the toilet seat bolts or fasten to the floor. The ones that slip under the seat can be unstable and actually prompt a fall.
Install handrails on stairways that go past the end of the steps and onto landings.
Ensure lighting is adequate for clear vision of the person concerned. Especially, ensure that the pathway to the toilet is clearly lit. Suggest that motion sensor lights under the bed to light the bedroom pathway at night, perhaps extending down hallways to the bathroom itself are highly recommended.
Ensure all rugs are fastened to the floor and stairs and are not loose or bunched up.
Remove all throw rugs they a re a slip / trip fall hazard.
Eliminate clutter by removing things not necessary or needed.
Move furniture to make clear walkways, and if possible to provide support to assist in preventing a fall.
Remove any electrical cords, especially extension cords that could pose a trip hazard.
Reorganize cabinets and closets so that the things that are most often used are easily accessible.
Buy several reachers / grabbers to extend reach so that no one has to stand on a chair or ladder to reach anything.
Clean up and spills or wet surfaces immediately.
Buy Waterhog type mats (they absorb water) for the front and rear entrance doors. Wet floors are conducive to slips and falls.
Buy no-slip socks or slippers that have rubber grip pads underneath and make sure they are worn around the home.
Finally, take away anything that would prompt a person to move around unnecessarily, and move close to them things that they may need or want. The less the exposure to falls the lower the potential for falling.
Things that can Increase Safety and reduce fall risk
Fall Alarm Monitors and Sensor Pads
Typically pad actuated when the person arises from the bed or chair. These do not prevent a fall but trigger an alarm when the person’s weight is no longer ion the sensor. The alarm comes after the fact and the person may have already fallen so they indicate only that the person is no longer on the pad. They don’t prevent a fall.
There are also passive infrared and optical sensors that trigger when an invisible beam is crossed. Depending on how these are placed they may or may not be effective as a warning.
Fall mats are a foam cored sensor pad that is typically placed beside a bed and trigger when weight is on them. This may be either when a person puts their feet on them or when they rollout of bed onto them. In the first case they can trigger a warning, but in the second case, as with bed and chair pad sensors, they may be too late. They can also be acquired without the sensor as a straight foam cored pad to place beside the bed
Grab bars are meant for support and need to be of the type that mechanically screws into the wall (not onto tiles or attaches via suction cups as these can release and trigger a fall because they give a false sense of security).
Shower Chair or Transfer Bench
Useful for getting into and out of the shower and sitting whilst washing under the shower. The transfer bench extends out of the bathtub into the bathroom so you can slide into the shower over the tub easily without having to step up, and then down.
These generally work but not on wet surfaces too well. Being rubber (like) when water gets underneath they can slip very easily. Use only on dry surfaces. Surfaces that get wet should be taped with anti-slip tape or treated with an anti-slip compound. Don't put these in the shower.
Canes and Walkers
These are ambulation aids for those who need extra support. They come with a variety of bottom attachments. Walkers can have rubber tips, skis, balls (tennis type) or wheels. Canes can have rubber tips, quad or single tips, or ice grabbers. Make sure that whichever is used it is adjusted o the right height and that it has a non-slip tip on the bottom.
Wearing properly fitted, low-heeled, non-slip footwear is far preferable than either barefoot or standard socks. Flip-flops, slip on shoes or shoes with slippery soles should be avoided. Where the patient has dementia or some other problem that could allow a fall then there are engineered clothing as slacks, under garments and helmets that have been designed to reduce the potential impact and injury in the event of a fall.
Hip protectors are available and they are pads that fit over the hips to afford some protection in the case of a fall.
A useful tip is to protect any sharp edges on furniture that could cause damage to a person if they fell against that furniture. You can but edge protection material which is basically an extruded foam or a simple and inexpensive solution is to buy the foam hot water pipe covers at the local hardward store and cut them to fit and secure with tape.
If your loved one is in a facility, check with the unit manager as to the fall prevention protocols they have instituted. Also, check the call button to ensure it is plugged in and working as often they can become unplugged. And finally, tell the patient that they should call for help using the call button if they need help and then wait till an aide comes. Tell them not to get up unassisted if they are a fall risk.
Living longer and better at the same time is what my book is about, specifically about the end-of-life when we are aware of the limited time we may have left. However, I am also concerned with an appreciation that if we can live longer and healthier lives through better preventative care then we can move the milestone of the inevitable out further. So the following is about how the ACA is helping do this and the downside of a repeal.
Repeal of the Affordable Care Act: The hidden costs
With the Affordable Care Act (ACA) came a number of benefits to the population that are seldom discussed and which, when they are gone will have a direct impact on health care in a significant way. Contrary to what most Americans believe, the US does not have the best healthcare system in the world, but it does have by far the most expensive. Actually more than twice as much as the next most costly healthcare system in any country.
The World Health Organization (WHO) places the USA in the 47th place (2015) in delivering quality health care based on a number of criteria, but focused on quality of care. This position has stabilized and we are seeing an improvement in care quality.
Maryland hospitals, for example around 2012 adopted a global payment system and consequently they have improved quality care goals. They reduced reduced potentially preventable complications by 48 percent, and have been reducing the Medicare all-cause readmission rate, which was higher than the national norm by 57 percent. This is just in the hospital realm alone.
Inroads have also been made in the global payment model with primary care where incremental care is rendered at a preventative level to reduce the risk of catastrophic illness requiring potentially life threatening and expensive surgical interventions.
The upshot is that the focus has moved from full fee-for-service to a more preventative healthcare delivery model aimed at keeping a population healthy instead of reacting to health problems. It’s a quality model and is becoming increasingly interdisciplinary.
To understand the road healthcare has travelled over the last 70 years up to today, you need to go back to the emergence of the Health Maintenance Organization (HMO) during the second world war. This was a concept formulated by Kaiser to ensure their workers were healthy and able to build the war goods necessary for victory. Kaiser built, amongst other things, liberty ships. The notion behind the HMO was that keeping the population healthy ensured continuity of labor and it was less expensive than letting people become catastrophically ill to the stage where they could no longer work and needed expensive medical interventions. Avoidance of disease is better than cure as any physician will tell you and Kaiser understood this, hence the HMO.
So while this made sense (and still does), post WW2 the population became more mobile, moving from job to job, relocating within the country to work and opportunity locations and this workforce expected benefits, such as health care. The concept of the job-for-life has gradually disappeared from the American dream. This meant the HMO that had kept the population healthy, and this healthy population moved on and was then covered by the insurance carriers who did a fee for service reimbursement. Those insurers gained the benefit of the healthy population and had lower costs. Their overall costs diminished and made them more competitive, not because of what they provided but as a result of what the HMO had done in health maintenance. So having a stable, non-mobile workforce with a health maintenance program became a lesser business model because the HMO was keeping people well to the ultimate benefit of the fee-for-service payers. This led to the eventual demise of the HMO and expansion of fee-for-service.
Fee-for-Service may sound like a good business model but it is not so great for the population. It only fixes problems when there is a problem. You could say its like not having your care serviced with oil changes and only going to the garage when the care breaks down. Healthcare providers post HMO and pre-Affordable Care Act (ACA) had little to no (financial) incentive to keep the population healthy and instead had a very definite incentive to fix major health problems. The reimbursements for a major interventions became – and still are – much more lucrative for the provider than a health maintenance program. Medicine in the US is largely for-profit based and while there are numerous not for profit care organizations most are based on the for-profit model.
Without painting the medical profession as completely mercenary, it is only logical to understand that if you are graduating medical school you see the opportunity more in a sub-specialty (say cardiology, orthopedics, etc) that have higher income potential than one that is paid a lesser amount (say a primary care physician). There is also kudos and status that goes along with a high income generating sub-specialty. This is partly why there seem to be so many cardiologists, for example, and so few primary care physicians, and while this is not the totality of the reasoning, it does go a long way to understanding the reality.
So what we ended up with pre-ACA in the latter part of the 20th century was a fee-for-service health care delivery model, and this explains why America has so many wonderful physicians who are in subspecialties and perform amazing interventions in so many complicated cases.
The revenue differential to the provider between putting a person on a healthy regimen to reduce illness risk is far less profitable than a high tech invasive procedure to remedy the problem if left unchecked. And it goes a long way to explaining why we have so many complicated cases in the US that may have been prevented. In many instances, if the patient’s problem had been checked earlier then the question is whether they would end up in a critical care situation needing expensive and complex intervention. In the US the health system is good at fixing catastrophic health issues but not so good at preventing them in the first place. That is one reason why the US health system ranks at only 47th place on the WHO scale. This is not a cynical view that healthcare providers want people to be sick with complex issues so they can make money, but it is the point at which the for-profit system of healthcare delivery has ended up.
Enter the ACA also known as Obamacare. Several innovations came with the ACA in how care could be rendered. Firstly, the ACA invoked and expanded a care model called an Accountable Care Organization (ACO). The ACO looks after a population – sort of like the way an HMO did but updated. The ACO is accountable for the health of that population and are paid based on that population (see Global payment system above). As such have a vested interest in keeping the population healthy and avoiding expensive interventions if they are not necessary. This explains why there is a closer focus by them on disease prevention than previously and in comparison to other types of provider organizations.
Along with the ACA came a focus on quality care that can be measured by outcomes statistics. Keeping the population healthy earned rewards, whereas not doing so earned demerits, so apart from just the cost of delivering care there is an accompanying upside and downside metric.
Part of the outcomes metric is the quality issue surrounding readmissions. Pre-ACA if a person was readmitted because some reason, such as a hospital acquired infection, or because of some quality issue then the hospital would render the necessary remedial care and then bill for it. And they got reimbursed because they got reimbursed for their services. Under the ACA a list of procedures where readmissions occurred within a period of time post discharge would incur a penalty. This penalty started at 2% of the procedure reimbursement and rose to 6% over several years. In addition, under these quality guidelines the hospital was responsible also for the cost – they couldn’t bill to gain revenue from fixing their mistakes anymore. The impact of these quality penalties and the remedy of fixing the problem can be significant to the extent they could even impact the viability of a marginal hospital. The result has been an improvement in the quality of outcomes and a reduction in readmissions. This is another quality measure in the ACA that has worked.
What has resulted under the ACA is a shift in focus to quality care based on evidence, and the management a healthy population rather than a focus on just delivering services. The shift towards incremental preventative and curative care at early stages in a patient rather then reactive care at later stages has begun and is showing the results. As this model of care expands over care networks, augmented by electronic medical records that can be shared by the health care professionals so we can anticipate better quality preventative care. This should lead, and the current indicators show it to be the case, to a healthier population, lower costs and a raising of the US in the WHO listing.
A repeal of the ACA puts this change of core philosophy in rendering quality, preventative healthcare at risk.
Reduction in readmissions to hospitals from nursing homes proves ACA quality measures work.
The Affordable Care Act (ACA) has brought with it a raft of value measures based on readmissions to ensure quality healthcare and reward providers for quality rather than quantity (as was the case with fee-for-service).
Repealing the ACA puts this initiative at risk and can reverse the trend toward improved quality in care rendered. Of specific interest is that which concerns seniors and those most vulnerable in our society. Readmissions indicate complications and are linked to increased mortality.
According the the CMS (Center for Medicare and Medicaid) Chief Data Officer Niall Brennan under the Affordable Care Act (Obamacare) there has been a sharp reduction in readmissions of nursing home residents back into hospitals.
This is important because it reflects a fundamental quality of care issue at discharge and reduces unnecessary hospitalizations that complicate life for the elder patients and it also reduces costs. If readmissions can be avoided by ensuring the patient has received full quality care, is stable and can be discharged appropriately then this is an obligation for a hospital. All too often in the past patients have been discharged too soon, triggering a readmission when their health, post-discharge, falters in a short period of time. This is due in part also to many nursing homes opening Transitional Care Units (TCUs) to accept patients with greater complications at discharge and thereby requiring more intensive care.
The CMS office of Enterprise Data and Analytics reported that potentially dangerous readmissions had been very high for the Medicare/Medicaid population. They reported that in 2015, there were some 270,000 instances under Medicare/Medicaid and about 30% of these were because of Pneumonia, UTI, CHF, dehydration, COPD, asthma and skin ulcers. Between 2010 and 2015 the rate of re-hospitalization dropped 31% as a result of quality preventative efforts pre-discharge.
This reduction indicates that some of these issues are really avoidable in many patients and by avoiding them the population at large, especially the elder population, benefits. The focus on quality of care, identified through outcomes, is intrinsic to the essence of the ACA and as such should remain a mainstay in US healthcare.
Review by Amazon customer – January 15, 2017. You can see this online at amazon.com. Thank you to the person who lodged this review
“Thank you for this easy to read, not too big guide for those of us who are surprised to discover that we are aging! Life can change in a moment: stroke, heart attack, broken bones, much less a terminal diagnosis and suddenly you feel unprepared; grown children are asking questions - do we have the answers? Do we even know where to begin? - And then in walks this wonderful guide covering everything imaginable and lots we've never thought of! Perhaps you have not received the "bad news" and don't need to tie up all the bits and pieces right away. Nevertheless questions are popping up. This book has also served as a great comfort in that regard. It is wonderful food for thought and allows for intelligent conversation. I have found it so useful and calming when feeling overwhelmed. Even recommended it to my daughter who is facing medical challenges from other people in her life. Our lives and this world are so complicated; it is a relief to have such an all-encompassing guide. I highly recommend this book.”
On caregivers - some issues when there is reluctance and how to introduce them into their function successfully. Overcoming fears and apprehension for a successful caregiving experience.This is in addition to what is in the book.
After the decision has been made to hire a third party caregiver, the integration into the daily life of the patient becomes a paramount issue. Bringing a ‘stranger’ into the family home introduces a level of apprehension, and often a resistance on the part of the patient if this initiative is at the behest of relatives.
Different fears may prevail with the patient. These can include:
Fear that the family does not care enough to provide the care and that they want to ‘farm it out’ so as to avoid the unpleasant task. Some patients feel they have done everything to look after their relatives for years and now its someone’s turn to look after them. This can become a resentment if not resolved.
There is a fear of strangers which causes a level of anxiety because the patient is put into a position of dependence and can feel a need to supervise / watch the caregiver to ensure they do nothing wrong. How to resolve this trust feeling is very important if the the caregiver is to be able to render the care and the patient to accept it willingly.
There is the fear also of a loss of independence, which, if a person elects to stay in their home is significant. The loss of independence is emotionally threatening and with it comes the realization that we are aging and approaching end of life. We have been independent all our lives and now we are faced with losing this independence and with it self esteem.
Resolving these issues for an effective caregiving experience before they are an issue can be facilitated with a multi-step process.
Firstly, everyone concerned should engage in a discussion about the need for a third party caregiver, and what they should be doing. Deciding on the expectations of the person (s) filling that role as a group sets the stage. The discussion is important. Its important to share with the patient, especially if they show reluctance, that you need help to render the best care because you want them to have more than you feel you can provide. You need build the case for a caregiver first, and you need to get buy in from the patient.
If they are reluctant or have any fears at all suggest a trial period during which there will be some reviews and a decision to either continue of not.
Starting the process with a third party caregiver.
After checking out the caregiver, and their organization, to ensure you are getting a trustworthy, bonded and insured third party you need to start the process of integrating the caregiver into the daily life. Think of this as a number of steps to take.
The introduction of the person(s) who will be the actual caregivers. This person(s) may be different for the person you had interviewed and if there are to be more than one who will alternate, all should come for a sit down introduction and discussion. This introduction where the caregivers, family and recipient of the care are all present in a discussion build confidence because what is discussed is shared and open. Contact information should also be shared at this time and the contact information listed onto paper and posted near the phone and the contacts entered into mobile (cell) phone contact lists.
Following the introduction, the next item to be discussed is the plan of care. What is the third party caregiver going to do, when and how. This sets the expectation level by which the caregiver will be assessed and from this a schedule of activity linked to dates and times can be documented. This could be in the form of a checklist by day that will enable all parties to review the activity and be confident that all has been done. The plan of care is essential so that the caregiver can attend to everything expected and the patient can feel confident that all the needs are accommodated.
Also, any likes / dislikes, hobbies, crafts, special events or activities or anything at all unique for the patient and / or family need be discussed and documented.
A tour of the home should be provided as a group so that the caregiver(s) know where everything is and all the aspects of care that are dependent on the layout of the home. Any areas that are private, off-limits or personal should be pointed out so that everyone knows where they can and cannot go and what rules apply.
Set up a follow up appointment between the caregiver(s), family and patient to review at the end of the first period – say week or month depending on your choice of tine frame. This is a meeting to review and discuss how the care is going and air any issues and make any changes to the plan of care. Sometimes a patient will not want to air issues because they don’t want to compromise the caregiver with their employer. IN a case like this the family should speak directly with the caregiver organization and discuss the issues, taking it away from the concern of the patient.
Caregiving is a process over a period of time and during this period it is usual for the health and mobility of the patient, as well as their ability to accommodate the activities of daily living (ADLs) to diminish. This leads to a higher intensity of care required so constant monitoring of the process is required. As the patient’s condition lessens then an update to the plan of care may need to be made. Where this is the case then a new family conference is required and a discussion on the changes to be made to the plan of care. In some instances this can trigger a new caregiver(s) who have different skills / qualifications and if this is the case then the introduction process with the tour should be repeated and coupled to a regular review.
On Advance Directives and ICDs.
When framing advance directives, if you have an Implanted cardioverter defibrillator (ICD), and have a DNR (Do not resuscitate) then you may want to think about disabling the ICD as part of your advance directives. Do you want to have the ICD maintain your heart at end of life or not? You may want to have it disabled when facing limited life expectancy in the immediate time frame because the ICD will attempt to restart the heart if your heart slows too much and/or stops. The ICD stimulates the heart to keep it beating at a ‘normal’ rhythm. Leaving it activated, when you have a DNR, could result in an unwanted revival or keeping of your heart pumping when other organs are failing and this may be something you don’t want. You should discuss this with your physician, act upon your wishes and also document you decision.
Question on whether switching off an ICD (Implanted Cardioverter defibrillator) is the same as a Pacer (Pacemaker implanted) when you have a DNR. These devices manage the rhythm of the heart and provide stimulus to ensure that the rhythm is maintained. So the answer is that if you want to have a DNR and don't switch off (or have removed) any device that would keep resuscitating you when you don't want it. This prevents these devices from stimulating the heart and may lead to resuscitation in circumstances where the person would otherwise pass away naturally. If it is a natural death that is preferred then disabling them would be an appropriate measure to consider.
Updates on the Massachusetts End of Life Options Act (H1194, S1225)
Pro Testimony centered on:
Use in conjuction with palliative and hospice care – another option
“Choice, control & peace of mind” were all expressions used in support.
Bill does not threaten anyone who is disabled, veteran or under guardinanship
Choice triggers when curative measures exhausted and end of life is near and definite.
Patient can receive medication and choose not to use.
Certification process is thorough.
Patient option with voluntary physician assistance
Rabbi observed Jewish strong support because it is ‘gift of autonomy’
Delivers a calmer, more dignified end of life
Less than half those receiving drugs in OR actually took them.
Opposed testimony centered on:
Still seen by many as assisted suicide
Legal contradiction that may enable those deemed incompetent to be included
Some physicians fear a financial impact on themselves and hospitals
May increase death rate with alzheimer’s, economically disadvantaged and disabled.
Could lead to abuse for vulnerable patients.
May be difficult to assess a person’s state of mind in a few medical encounters
May reduce use of palliative care which has proven beneficial
Could be a permanent solution to a temporary problem that could be resolved.
Palliative care is still largely underutilized in the US because of a lack of understanding and knowledge. Reality is that palliative care is exceptionally valuable, as is full hospice. They provide comfort, pain mitigation and dignity and both have opt out options for patients. However, at end of life there are other factors influencing quality of life and the discussion is whether the end of life options act provides another option, and its value, ethics and morals. 7 US states currently have similar legislation.
The End of Life Options Act presents some questions for healthcare providers that include moral and ethical issues but also ones of training and knowledge. One Californian physician, Jessica Nutik Zitter, has confronted the issue only to find herself wanting in knowledge and training. After all, physicians have not been trained in how to help someone end their lives but rather in how to cure problems and keep patients alive.
Dr Zitter is a critical care and palliative care physician at a major hospital and articulates the problem from that of a physician in her New York Times article.
As patients we tend to think of our physicians as having the expert knowledge we need to remedy those issues that face us. Dr Zitter faces the issue of aid in dying from the perspective of a palliative care physician in a way that helps us understand this ‘other’ human side to the issue.
This is a follow up to the article I posted on the Massachusetts End-of-life Options Act before the state senate currently.
Her complete article, "Should I let My Patients Die", cab be read on the NY Times web site :(https://www.nytimes.com/2017/08/05/opinion/sunday/dying-doctors-palliative-medicine.html)
This Thanksgiving, Carve Out Time To Talk About End-Of-Life Wishes
By JoNel Aleccia NOVEMBER 22, 2017
Kaiser Health News.
The roast turkey and pecan pie may be the same as always, but growing numbers of families plan to add a tradition to their Thanksgiving holiday this week: a frank talk about their wishes for end-of-life care.
Paul Malley, president of Aging with Dignity, the agency behind Five Wishes, a popular living will, says requests for the documents that guide decisions surrounding serious illness and death typically surge starting now.
“We see a bit of a Thanksgiving rush and a bit of a Christmas rush in December,” said Malley, who notes that 30 million copies of Five Wishes have been distributed since 1998.
Turkey dinner with a side dish of death isn’t everyone’s idea of a festive meal. But Malley and other experts in end-of-life talks say the holidays are an ideal time to have hard conversations about final preferences and plans.
“People come home for the holidays,” said Ellen Goodman, the longtime columnist and reporter who co-founded The Conversation Project, which provides kits to kick-start end-of-life discussions. “It’s one of those times when we’re together. It’s something that’s important to talk about.”
While many families will start such discussions for the first time this year, Dr. Patricia Bomba’s family has made the talks a tradition since 1992.
“After the dinner dishes are cleared, the adults in our family stay at the table and talk about what matters most in our lives,” said Bomba, vice president and medical director for geriatrics for Excellus BlueCross BlueShield in New York.
Her family joke is: “There’s no pumpkin pie until you tell me how you want to live until you die,” she added. But the holiday sessions helped guide serious decisions when Bomba’s mother died, she said.
The conversations typically occur between middle-aged children and their elderly parents or grandparents, but they should include all of the adults in a family, Malley said.
“Don’t just put your grandparents in the hot seat,” he said. “It makes for a better and easier family conversation if everyone is in it together.”
The goal is to ensure that people’s preferences are honored. But the talks also can reduce the guilt and depression many family members feel after a loved one dies.
“You can talk about what your values are, who you want to make decisions for you, the care you want, the care you don’t want,” Goodman said.
Often, though, no one wants to broach the subject, even when they think they should. A 2013 Conversation Project survey found that while 90 percent of people said it’s important to have end-of-life discussions with their loved ones, fewer than 30 percent had done so.
Nationwide, about a third of adults in the U.S. have completed written advance directives that spell out wishes for care or designate the person they’d like to carry them out, according to a study in the journal Health Affairs.
Research shows that advance care planning, including the use of written documents, can increase the chances that people’s end-of-life wishes will be followed.
But conversations held over time are key, said Jeannette Koijane, executive director of Kokua Mau, the Hawaii Hospice and Palliative Care Organization in Honolulu.
“Just checking the boxes is not what makes the difference. It’s the conversation that makes the difference,” she said.
Having those conversations in person is important, too, said Malley, who plans to help his parents, who are in their 70s, update their documents over the holiday.
“It’s a natural time to discuss which one of us boys do you want to be your health care agent?” said Malley, the youngest of three brothers. “My parents are teaching us about advance-care planning by doing this together as a family.”
Still, starting such a conversation can be difficult, Goodman said.
“People think if I bring this up with my elderly parents, they’re going to think I want them dead. Or there’s something wrong,” she said.
But if family members can explain that the goal is to understand what matters most to the person at the end of life, the conversation changes. The agency has put together a video that uses humor to show how to break the ice.
“When you say how important it is to you, it’s truly a gift,” Goodman said.
She sees a shift in the culture surrounding end-of-life wishes, even in the five years since The Conversation Project started.
Back then, the specter of “death panels” nearly derailed Obamacare. Today, end-of-life conversations are being paid for by Medicare and books like Atul Gawande’s “Being Mortal” have topped the best-seller list.
“I’m convinced we’re at a tipping point,” Goodman said. “It’s so important to get it right. When you get it wrong, you get something big wrong.”
Read this on the Kaiser Health News web site:
The newly announced move towards a “Right to Try” experimental medications has raised serious ethical questions amongst the medical profession with clinicians arguing on both sides.
Currently, any drug needs to pass a verifiable process to validate that it does what it is purported to do before it becomes available to the public. The FDA in evaluating new drugs looks to see if it does what it is supposed to do withoutharm and that it does it better than an existing drug.
The drug trials go through a double blind procedure (Neither the trial population nor those administering the test drug do not know if it is the drug or a placebo) where the efficacy is tested on a population, the data is recorded and is submitted to a scientific and statistical evaluation. The rigorous trial is time consuming and detailed but the outcome is a medication that does what it is represented to do and has defined safety limits with prescribing guidelines.
Using an experimental drug means using something that may be thought by some to help but has no scientific or clinical proof. It may do harm, the prescribing details are not proven and the outcome is uncertain. Drug trials have scientific support whereas administering an experimental drug has not.
Those in favor use the “nothing to lose” argument, which has merit. If you are facing an incurable medical issue and there are no alternatives, then an experimental drug that may work seems like a really good idea. If you are facing imminent death and see this as a hope with a possibility of extending life, then should you be allowed to take the drug and should a physician be able to prescribe and administer it? If there is nothing to lose then why not?
There are ethical, clinical and legal implications to the question.
Those who are not in favor see this as extending a probable false hope to patients already desperate and this raises significant ethical questions for them. If the hope is false does it also prevent the patient from making final arrangements for their end-of-life and enable them to spend their time in a different way of their choosing? Additionally, an experimental drug may cause more harm to the patient – this is an unknown because it has not been subjected to scientific testing.
According to Kaiser Health News, a letter was drafted by Alison Bateman-House, the associate professor of medical ethics at NYU Langone Health, along with some of her colleagues. It will be sent to the leaders of the House Committee on Energy and Commerce which is the committee currently considering a so-called “right-to-try” bill. This draft letter is being circulated for online signatures of support on Thursday February 1st, and is intended to be sent to the government on Feb.5.
The medical profession is thankfully cautious about this, however, they are also deeply concerned that patients get the cure they need. It will be interesting to see how this plays out.
I don’t discuss this in my book because it is not a current option legally and the ethical questions have not yet been resolved, but now that the discussion has started it has my attention.
Read more at: https://khn.org/morning-breakout/right-to-try-bills-give-patients-false-hope-and-weaken-fda-safety-measures-ethicists-argue/