For several years, I’ve been teaching the importance of end of life planning, with a special emphasis on medical care with the new bright pink forms, the Physician’s Orders for Life Sustaining Treatment (POLST). I’ve discovered that for many, the term of “end of life planning” translates to funeral expenses. Few realize, or find it hard to consider the possibility, that “end of life” planning can also mean how a person might want to live in the last year of life. The exact moment of when death will happen is a mystery to us all. However, ask anyone who’s been around the dying process and most likely, they’ll be able to agree what it may look, feel or seem like if someone is months, weeks, or even days away from dying. But, rarely, is anyone brave enough to state clearly and directly to someone who is actually asking, how much real time might be left. If you had fifteen days to live, how would your life look? This last year, I met a man who was admitted to the hospital, knowing he was dying. His end of life planning consisted of disposition of most of his personal possessions, and then checking himself into the emergency room for hospital admission. He had no health insurance and a very small savings account. Though he “knew” he was very ill and dying, he had no idea on the “when.” First, he was admitted into intensive care. He had x-rays, blood draws, IV’s, ultrasounds, radium scans. The doctors were trying to figure out why he was going downhill so fast…his organs were failing, and they didn’t have an answer why. Tests, and more tests, were ordered daily. He asked about transferred to an inpatient Hospice in San Francisco. He knew he was dying, and his strong spiritual beliefs dictated a practice in the dying process that could not be honored in the hospital. He wanted to die with a “clear mind,” free of interruptions and distractions. Realizing his physical body was rapidly declining, he fervently wished for spiritual clarity. Nurses, doctors, chaplains and social workers were his daily visitors. His thoughts were interrupted hourly with questions on his well being, state of mind, etc. New people came in on every shift change, three times in 24-hours, and even more so on the weekend. Tests and more tests. Treatments, procedures, and specialists loomed over him on a daily basis. He asked when he could leave, where could he go, how can he get there…so he can die in peace. He just wanted to die in peace. On the tenth day, it was acceded that nothing more could be done. So, talk was started about discharging him to a local board and care home and bringing in the local hospice team for support. He was discharged on the 12th day, taken by ambulance to a board and care home, in unfamiliar surroundings, where he knew no one. He asked for three things: A boom box to play his meditation tapes, his meditation tapes from home, and a monk from his faith at his side to help him through this transition. We got him two out of three. His daughter and her family arrived the evening of the 14th day. He died the next morning. Last week, I reviewed his medical bills. In the last 12 days of life, over $177,502.00 was spent on his medical care. His bill included all types of diagnostic procedures, labs, x-rays, etc. But, also sessions of physical therapy, and home management therapy. Because he didn’t have health insurance, the hospital gave him a self-pay discount. The rest of the bill was submitted to and paid for by Medi-Cal. Now, how do you think this whole dying process went for this man? Except for clearing out his personal possessions, he didn’t plan his dying process at all. Even so, he was steadfast in his pleas to strangers to carry out final wishes which were, frankly, behind the capability of almost everyone on such short notice. Unfortunately, what he wanted the most, a serene peaceful place to die, in the presence of a spiritual mentor, didn’t happened the way he might’ve wished. Instead, he got the best medical care available in Napa County. The effort was to find out what was wrong, so he’d live. Because that’s what our medical system is geared up for…life, not death. But it just so happens that death happens anyway. And, when we ignore the process of dying, we are erasing the ability to live a quality of life that we might prefer, until the moment of death. Taking personal control of how one might want to live until the moment of death is what end of life planning is really about. There are many ways to do this, but completing an Advance Directive, having conversations with loved ones, completing a POLST form, and clearly writing down wishes, is a place to start. The Advance Directive and POLST forms are available from the concierge desk at Queen of the Valley Hospital. Start the conversation with your family, you might be surprised where it leads.

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Who’s minding the labor law protection of the thousands of caregivers who are working behind closed doors under circumstances that may be “standard” for that industry, but illegal everywhere else. In California , the home care industry can work their folks 24 hours a day, 3, 4 or even 5 days a week without a break for food, showers or a nap? They can do it because of the belief that they are exempt from current labor laws because they are “taking care of vulnerable seniors who cannot be left alone.”

Let’s take a closer look at this.

These caregivers are earning low wages, are often marginally employed (when this case is over, they don’t know when they’ll be called in on another), and at the mercy of their employer who hires them “at will” for each particular case. A caregiver may be working for five or six agencies at a time in order to keep their hours to a liveable rate. In other words, they might be working at XYZ agency on one case, and then when it ends, get called by ABC agency to work another. Home care agencies often share caregivers because no one can guarantee a 40 hour work week.

It came as a surprise to me when a home care agency I recently hired to care for a family member brought in a caregiver who worked five days, four nights, without sleeping. She kept telling me that she was “okay.” For me not to worry, that she’s “used to not sleeping for days at a time in this type of work.”

What? How can a sleep deprived caregiver be held responsible for measuring medications, monitoring vital signs or even getting along with family members? Needless to say, as the days wore on, (and they did wear on everyone, this particular caregiver became increasingly sharp, opinionated and interfering. She was unable to gauge changes in circumstance, and was adamant that she was in control and all was in order.

Whatever came to pass, I could tell that this caregiver didn’t want to lose this job, or be replaced, because she desperately needed the money.

Of course she wants to earn a living, and these low wages mean that she has to pack in as many hours as possible in order to make enough to live on until the next job comes along.

And, when I worked as a caregiver, I too tried to pack in as many hours as possible because I had no idea where the next job would be coming from.

But, these are not fair or equitable working conditions.

Home care agencies charge a premium for their services. What they publish as the going rate of $25 an hour, may not be what’s actually charged. There are caveats for overtime, holiday pay, minimum number of hours and shift work. If an agency has to bring in 3 different people to cover a 24 hour shift (8 hours each), they’ll charge a premium as well.

An agency can charge overtime and holiday fees, but I’m wondering how many actually pass this on to the caregiver. I just received a phone call from a disgruntled consumer who asked me why the home care agency charged them for the two hour “break” that the caregiver was supposed to have each day.

Of course, the agency’s moan about the worker’s compensation and employer benefits that must be paid. And, they also talk about overhead expenses, nonpayment, lagging insurance payments, etc.

Everyone’s got their side.

But, the truth is that caregivers are the lowest paid folks on the totem pole and right now, they’re working without third party oversight. And, it’s all done behind closed doors.

No vacation or sick days. No benefits. No guarantee of work.

And, these are folks delivering the most personal of care in often the most vulnerable times of anyone’s life.

There’s gotta be a better way.

Last week, I received a phone call from an 80-year-old woman who was perplexed about continuing her long term care insurance policy. She’d been paying into it for 15 years, but now, they were raising rates again. It would mean shelling out, every month, about $752 for her husband and herself. When she read the fine print on how she’d eventually qualify for payments, she was shockedby the criteria …not able to perform 2 out of 7 Activities of Daily Living.

“By the time I get there, I’ll be in my last month or so of life, anyway,” she complained. “What’s the point? I can pay for several months of care out of my own pocket and it won’t hurt my bank account at all.”

Exactly.

She and her husband own their home, have substantial savings, a trust fund and somehow were talked into buying long term care insurance. Their purchase guaranteed them some safety in the face of the greatest fear of all, growing old, suffering, and having no money.

The truth is, insurance is sold based on the “what if’s.” There is no guarantee that a “what if” is actually going to happen. Though, you’d never know that talking to an insurance salesman or financial advisor.

Needing long term care is not an inevitable fact of aging.

All the statistics that are thrown at us…well, it’s overwhelming bleak and futile…we’re all going to die demented, in pain, alone and of cancer. Right?

Look around and see what’s happening to your parents, your friends and the elders you know. If people ever need home care or assisted living, it’s in the very last part of life. In my experience, that is usually about a year or so. But, most often, it’s only been a couple of months.

I also know plenty of folks who had long term care insurance and never used it at all. They died quickly, unexpectedlly or didn’t qualify for the services up until the very end. One very dear 95 year old friend always pulled up her long term care insurance as the “asset in the hole.” She never used it. Instead, she went unto Hospice (a covered Medicare benefit) and died within 30 days, never qualifying for the 100 day window of the long term care insurance benefit. She estimated that she’d paid into her insurance policy over $30,000 in the past twenty years. That’s three times her out of pocket costs in the last month of life.

But, it’s not always a matter of money. Or, is it?

I’d be curious to know the percentage of long term care policies that have been utilized in the past decade, as compared to those that have been purchased. And, how much money has actually been spent, vs. invested, in long term care.

Does anyone have those figures? And, I’d like that compared to other insurances…health, auto, and homeowners, for example.

I tell people to take a look at their life circumstances, their health, family support, bank accounts and be realistic about who/what might be needed as they age.

Maybe just setting aside money in a special account for “old age” is the best idea of all. That way, it can be used as needed, rather than jumping through hoops of qualifying for a number of activities of daily living.

Or, how about forming relationships and networks of support that can help out in times of need? Not all of us are destined to live in assisted living facilities, or have a home care attendant coming in on a daily basis.

Long term care insurance didn’t exist 30 years ago. Why do you think it does, now?

I think there are numerous factors to consider before making a decision to purchase long term care insurance. And, I recommend that each of us look at our circumstances and plans for aging.

I read today about a 75-year-old skateboarder. He took it up at age 65. I doubt that he’s going to need long term care insurance, when he goes, it’ll probably be very quickly. But, it’s all a guess..a risk…and, it’s about fear, life and aging.

And, that’s why it’s important to look at what the insurance industry is telling us to expect in the future, and then live to prove them wrong.

My 53-year-old aunt died last month from cancer. She had cancer for 18 months, but not once did it ever occur to her, or her husband, that this was a terminal disease. The doctor’s kept assuring them that cancer is “chronic, and there’s no reason why, with current treatments, she won’t live a normal lifespan.”

So, for 18 months, they both concentrated on the hope of keeping her alive, rather than the reality that she was actually in the last year of her life.

She had no Advance Directive, never completed a Physician’s Order for Life Sustaining Treatment (POLST), didn’t have a will, and had not had a conversation with anyone at anytime about what she’d actually want for end of life care.

I wish she was an exception, but I can look at both my parents and many other loved ones and say the same thing…in my family, talking about death or end of life is so taboo that bringing up the subject at all is fraught with the consequences of verbal condemnation and an outright shunning for weeks, if not months. When my aunt was dying, my uncle forbade family members to mention death in front of her. And, regretfully now, we followed his wishes because if we didn’t….well, he wouldn’t allow us in his house, or to talk to her on the phone.

So, in the last hours of consciousness, my aunt had all sorts of business to take care of…all, while in a morphine induced state of euphoria which was interrupted by stabbing bouts of uncontrollable pain.

The most important part of the business was giving Power of Attorney for Finances over to her husband because they had held separate bank accounts throughout their 25 year marriage. The first notary, who was called to witness the signing, refused, due to my aunt’s diminished capacity. On the second notary, the nurses withheld the medications for an extra 15 minutes so that she’d be awake enough to sign the paperwork.

But, after hospital discharge and sent home on hospice to die….well, we never had a coherent moment, again.

So, no matter how many times I asked her for preferences, or what we should do after she dies…she’d look at me blankly, then closed her eyes to return to sleep.

What happened to her body, her care, her money, her possessions…well, that was no longer her concern. My aunt was dying and the rest of it was up to us…well, actually me, because my uncle had also crossed the threshold into total incompetency.

I had no idea what she wanted. A chaplain? Candles? Music? Family members? Silence? Windows open/closed?
Religion? Chanting? Comfort? No clue. So, we improvised. Trying everything for awhile, and then moving unto something else.

After death…do we cremate? Bury? Where? How? Religous? I simply had no idea.

Without an Advance Directive, everyone looked towards her husband to lead the way…except in this case, he was incompetent, unaware of anything but his own pain. At one point, he asked that we investigate passage to Germany in the hope that a liver transplant would give her a few more weeks of life.

Without a POLST, we didn’t know whether she even wanted Hospice, or comfort measures…or had any personal preferences about medical care.

Without a Will, we had no idea where her money was, how it was to be allocated, or whether there were beneficiaries, other than her husband, that she might’ve preferred.

Without a conversation about death, we had no idea about after death arrangements.

So, instead of a plan…well, we had chaos.

Planning ahead no longer mattered to my aunt, but I am willing to bet that she would’ve been mortified to see the chaos that ensued around every decision that was to be made. I’m sure, in her heart, she would’ve spared us all this pain if she’d known what a difference it would’ve made to have made a plan with clear directions on personal preferences in all aspects of medical care, treatments, dying, and after death…as well as her estate, finances and dispersal of personal possessions.

It’s been six weeks since she’s died, and there are family members who are no longer speaking to each other. She was cremated, and her ashes placed in a mortuary niche. Only after the cremation occurred did we receive a phone call from her mother begging that she be buried in New York. Cremation, it turns out, is against the Russian Orthodox faith…except my aunt had never practiced her religion and no one believed it would matter to her. But, what we believed…we didn’t know for sure.

And, my aunt refused to tell her mother, or her sisters, that she had cancer at all. So, in the telling, we had to face the pain of them knowing everything at once.

If I had a lesson to pass on to all of you, I’d ask that you make a plan. It may not matter to you at all in the final throes of the dying process, but I can assure you that it will make all the difference in the world to your family.

And, it’s not just about dying.

Remember, that 50% of us are targeted for some sort of dementia. So, dementia could take away our abilities to plan for ourselves, leaving that task to others.

So, do it now.

I’m 55 years old. I have a trust, a will, and an Advance Directive. My children know my wishes of how I’d like to live as I age, and we talk frequently about personal preferences in all aspects of our being.

And, if I’m dying…well, I want to know because I want to make sure that my life is going to be the best that it can be up until the end. I don’t want to end up stuck on a chemo drip IV in the last week of my life in the hope that this one will be the miracle that will turn everything around.

The Sharks are Circling
I’m tired of the fear tactics incurred by all the business minded do-gooders in the senior care industry businesses trying to find ways to sell, sell, sell. Bring on the fear, so we can all make money.
We are warned to be afraid of falling, getting old, disease, looking bad, children ripping us off, being taken advantage of by insurance agents, financial specialists, mortgage brokers and scam artists, driving, wrong diagnosis, Medicare/Medi-Cal liens, not being able to see or hear, losing our minds, making mistakes with our medications, not taking our medications, being medicated at all, probate, courts, being put on machines, and most of all dying. The entire senior care business is being promoted and driven by fear. And, if you don’t buy a particular service or product…things will only get worse.
Seniors are different than the rest of us. They even have their own name…”seniors.” That defines the separation of both type and character. A “senior” isn’t me…it’s someone else. Until, of course, I get that age and suddenly become someone else.
When did getting old get so complicated? Where did all these “helping experts” come from?
Well…many have come into senior care to make money, earn a living, have a successful life. And, when other businesses failed or suffered with the recent economic downturn, they market forecasters told them, “thar’s gold in them thar old.”
And gold there is. Ten years ago, in my community, there were two home care agencies. Today, there are over 26 agencies. I’m not convinced that in one decade we’ve seen thousands of people suddenly succumb to age, illness and fraility. I sense somehow that having these services also works to increase the need. Build it, and they will come. And, the more they build, the more incentives need to be developed for people to actually be led to and pay for these services.
So, let’s pay people for “leads.” Now, we have referral agencies, “experts in senior care,” driving business to home care agencies, assisted living centers, attorneys, mortgage brokers etc. Referrals have become a business all on their own.
We’re selling access to old people the way to we sell leads to sell garage doors. And, why not? As the economy fails in one sector (banking, real estate, mortgage sales), it’ll boom in the anticipation of an aging marketplace, and in this case, business practices that follow one industry are blindly applied to the next.
Nowadays, the aging human being is a commodity… to be traded and bartered for a profit to be had by all the traders. No kidding. Gifts, luncheons, trips, and service trades are all par for the course and businesses pledge gifts and money to referral sources in order to gain access to a referral that can easily bring in $100,000 or more worth of revenue in less than a year.
Would it make a difference if you knew that the “best” assisted living retirement home was actually kicking back a referral fee of $2,000 to the so-called self defined expert making that referral?
It’s the gold rush heyday of aging as corporations, brokers, placement agencies referral services and all sorts of sudden self- proclaimed “experts” jump into the field to direct the unknowing public to the “right service,” at the “right time.” Except, those unsuspecting members of the public don’t know that palms are being greased all the way down the line with the final receiver awaiting the jackpot to make the sales goal defined by a corporate honcho several states away.
When a marketing director hangs the phone up in my ear for “interfering” on a referral when I question the validity of transferring a legally blind, 93-year-old woman who is at the end of her life, into a 70-bed facility with no low vision accommodations, I wonder who is protecting consumers from the fear mongers determined to make monthly sales quotas and keep their job for another quarter?
Because the reality is, that I’m not 90 years old today, but I hope to be so one day. Be forewarned that I will be warily suspicious of all the money grabbers waiting for this aging baby boomer to hit the skids so that my pockets can be emptied into their ever-hungry coffers.