Tag: End of Life Care

Paying an Arm and a Leg for a Month of Life?

Apr 19, 2012• 110

By Peter Ubel

Imagine for a moment that you are an oncologist caring for a 53-year-old man with metastatic cancer, a person whose tumor has spread to lung and liver.

With standard chemotherapy, this man can expect to live around 12 months. That standard treatment isn’t all that expensive in today’s terms, only $25,000 and his insurance company will pick up the entire tab since he is already maxed out on his yearly deductible and co-pays.

But wait! Before prescribing the standard treatment, you find out there is a new chemotherapy on the market, one that costs $75,000 (in other words, fifty thousand dollars more than usual care) and has no more side effects than that standard treatment.

How much longer would patients like this have to live, on average, for you to feel that this new chemotherapy is warranted?

That’s not an easy question to answer. But it’s not an impossible one either. Clearly if the treatment would provide only, say, 1 day of additional survival on average, that would not amount to $50,000 well spent. Just as clearly, if this man could expect 10 years of additional life, no one would deny him this new treatment.

So when, between 1 day and 10 years, does it become a tough call whether to prescribe this new treatment?

Two Patients Coded

Jan 13, 2012• 1

By Paul Levy

My recent post on end-of-life care issues, “What if they had had to pay?,” generated a lot of comments in the blogosphere and beyond. One intensive care doctor sent me a particularly poignant note. It gives a good sense of what it is like on this person’s side of the bed. The note re-emphasizes the need for better end-of-life planning, for the sake of patients, families, and providers.

Here’s my day so far. This is my first day of a 7-day stretch in a tertiary ICU. The average census in this ICU is 10, but today we have had to surge to 15.

Let me stop right there. This is doctor (and nurse) shorthand for, “I expect to be very busy, very tired, and very stressed out. I am going to have to make some highly critical clinical judgments, sometimes with very little time to react. I don’t know anything about these patients beyond what is in the charts and what our care team sees and hears for themselves.”

Two patients today coded in our hospital. One family wants “everything” done, and seemed shocked to learn that I don’t think it is right to provide “everything.” The other family wished someone from the healthcare team had bothered to ask them what their 89 year old dad would really like to accomplish from his hospital stay before he tried to die. We decided to let him finish dying.

Continue reading…

The Last Six Months of Life

Dec 3, 2011• 17

By David M Sack, MD

This discussion was inspired by the two women I owe my life to: my mother and my wife.

I cannot identify the citation for this factoid, but the assertion has become engrained in the lore of medical urban myth: “50% of healthcare costs are incurred in the last 6 months of life.” (or some similar figure) There are other less arresting but more concrete statistics to be found. For example, according to Health Affairs, July 2001 vol. 20 no. 4 188-195, one quarter of Medicare outlays are for the last year of life. Another more recent discussion concerned the various factors that influence that spending in the last 6 months. An article in the Annals of Internal Medicine for February 15, 2011 vol. 154 no. 4 235-242 describes determinants of healthcare spending and points out that regional variation in medical care does not account for as much variation as is sometimes pretended.

A concise summary of that article by one consulting firm states “Individual characteristics such as black or hispanic race, severe functional impairment, having Medicare Supplement coverage, suffering from certain chronic diseases or from four or more, were associated with higher spending. Others, such as having a relative live nearby or having dementia, are associated with lower spending. And some, such as having an advance directive, sex, marital status, education, net worth, or religiosity, appeared to have no relationship. Altogether, patient characteristics account for 10% of the variation in spending in the last 6 months of life.” (Quoted from Kevin Roche at vitaadvisors.com) Yet even with all this taken into account, patient and regional factors accounted for only 15% of the variation.There seems to be a major subtext to all of this discussion about the last six months of life, whether the topic is cost, ethical issues, quality of life, or whatever. The unstated message is “WE ARE WASTING MONEY ON FUTILE CARE!”. The implication seems to be, “couldn’t we devote these scarce medical resources to more beneficial use?” and “Why are we prolonging suffering and poor quality of life at such great expense to so little gain?” I ask myself these same questions whenever I walk down the corridor of the ICU to see a consult, past room after room of people on ventilators, bloated, mittened and tubed beyond our ability to recognize them as the same individuals seen in the photos I sometimes see pasted to the wall opposite the bed. “Don’t we know”, I ask, ”when to cease and decist?

Occupy with Grace

Nov 23, 2011

By Alexandra Drane

Every Thanksgiving, Engage With Grace has a blog rally asking everyone to take time to start that most difficult of conversations–what do you want to happen near the end of your life? And as ever THCB is honored to take part — Matthew Holt

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about – it’s an issue we have the luxury of being able to hold hands about.

It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.

It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.

How to Avoid Death in the ICU

Aug 26, 2011• 7

By ELAINE SCHATTNER, MD

Something I learned as a medical intern is that there are worse things than dying.

As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.

An attending physician, a smart guy I respected, approached me as I completed the procedure.

“It’s kind of like Dante’s seventh circle,” he noted.

Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.

“Yeah,” I said as we walked out of the room to review another patient’s chart.

Sekou & Steve: When Does Death Begin?

Apr 10, 2011

By MATTHEW HOLT

This was sensational when I saw it live at TEDMED and it’s even more amazing second time around. Sekou & Steve do 18 minutes of beat poetry & intensity–“we know when life ends, but when does death begin!

Death Panels Everyone Can Live With

Mar 22, 2011• 9

By DAVID E. WILLIAMS

Chief among Sarah Palin’s assaults on truth and reason is her contention that providing reimbursement for end-of-life planning sessions with a health care provider is tantamount to a “death panel” where a “bureaucrat can decide based on a subjective judgment of [a person’s] ‘level of productivity in society,’ whether they are worthy of health care.”

A Health Affairs article (Palliative Care Consultation Teams Cut Hospital Costs for Medicaid Beneficiaries) makes a far more level-headed and evidence-based contribution to the discussion. The authors studies the use of palliative care teams at four urban hospitals in New York State. To be clear on what these teams do:

Palliative care aims to relieve suffering and improve quality of life for patients with advanced illness and for their families. It does so through assessing and treating pain and other symptoms; communicating about care goals and providing support for complex medical decision making; providing practical, spiritual, and psychosocial support; coordinating care; and offering bereavement services.

Palliative care is provided in conjunction with all other appropriate medical treatments, including curative and life-prolonging therapies. It is optimally delivered through an interdisciplinary team consisting of appropriately trained physicians, nurses, and social workers, with support and contributions from other professionals as indicated.Continue reading…

The Ultimate Sacrifice

Mar 6, 2011• 29

By JOHN MAA, MD

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers.Continue reading…

To Die Well

Dec 15, 2010• 2

By ROB LAMBERTS, MD

Everyone liked him. Though his later years (the only ones in which I knew him) took away his ability to do most things, and though he was in great pain every day, it was easy to see the mischief in his eyes. The subtle humor was still there, coming out of a man who was weak, in pain, dying.

She lived for him. She was always telling me of his pain, frustrated with the fact that he didn’t tell me enough. She was anxious about each complaint of his, wondering if this was the one that would take him away from her. Many of her problems were driven by this anxiety and fears, and she spent many hours in my office giving witness to them through her tears.

As his health failed, I wondered at her future. He was the center of her life, the source of her energy, joy, purpose. How could she manage life without him? How could she, who had so much lived off of the care of this wonderful man, find meaning and purpose in a life without his calming presence?

Then he died.

I saw her in the office recently, and was amazed at the look in her eyes. It wasn’t the empty, lonely look I was expecting. It wasn’t the worried, helpless look that I had seen so many times. It was peaceful, content.

Engage with Grace

Oct 29, 2010• 4

By Alexandra Drane

This is the full text of Alexandra Drane's talk about Engage with Grace at TEDMED. I'm so proud of Alex for what she's done and her talk was outstanding–Matthew Holt

So when I heard that I was going to be speaking with all of you about end of life, I was a little sad at first…even though end of life is an obsession of mine….because TedMed is such a sexy event, and speaking here is such an honor. I wanted to talk with you about something like vitality – feeling alive, being empowered, taking life into your own hands…but then it hit me… that’s what end of life actually is – that’s what it can be when it’s done well.

But … It’s not usually. 70% of people want to die at home, only 30% do.

Here’s another stat you might not have thought about recently – You only die once. Think about that for one second – You only die once. Not my words – Atul Gawande’s in his incredible essay on end of life – ‘Letting Go’– which I am now declaring as mandatory reading for each and every person attending TedMed.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore. And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyers office where you pay a lot of money and get excited when you get to keep the pen.

But that’s not what it’s about. Not at all. Let me tell you a story.

Once upon a time there was this extraordinary woman named Za – short for Rosaria. Za was first generation Italian, breathtaking to look at, driven to become a pharmacist – the first in her family to go to college – and of course she was also human…She loved to enjoy…spending money she didn’t always have, generous to a fault. She was madly in love with her husband John and her two year old daughter Alessia, the apple of her eye. Deep within Za welled this enormous sense of joy – a deep gratitude for the life she had. As it turned out, deep within her also lived cancer – and not just any cancer – but the terrible and unforgiving brain cancer Glioblastoma – described by one of her surgeons as whip cream in a sponge – virtually impossible to eradicate. The seven month battle Za waged against her illness was a mighty one – she endured two massive brain surgeries, radiation, chemotherapy, all the related humiliations – but the cancer didn’t really care.