End of Life Links -- A Checklist

UPDATE: This post was originally dated April, 2013. Nearly two years have passed and I'm adding a few caveats about hospice. Hospice and palliative care continue to be under-utilized and avoided by many, but word is getting out. Mention of the word is not thought of as a death sentence as often as it once was. But here are three anecdotal links that reveal a dark side of hospice.

First, here is a comment left at a post at The Health Care Blog.

Gawande’s book is marvelous. But it did strike me that he had no new answers. In a way, how could he? There aren’t any. Yes, knowing what one wants at the end of life, understanding your values and so forth are helpful. But those are not answers to the fundamental issues of how society manages to give this care. Gawande knows that. 

I am not familiar with Wachter’s later work. The seminal Wachter/Goldman article gives short shrift to patient satisfaction. It may, in part, have set the tone. Then, this being the US system, anything that can be monetized, is. 

In the interests of full disclosure, I read the Gawande book while my mother was dying. She died about a week after I finished it. It was not a “good death”. My brother and I have been told many times in the past month our experience was common. If you’re of the mind, I write about it on my blog: 

https://kapsacare.com/not-ready-die-betrayed-hospice 

Until hospitalists, case managers and policy hounds understand what is really happening to patients and families in the community, the Gawande book will be a good start. But not an answer.

The subject of the post was an interview with Atul Gawande whose book, Being Mortal, (also published since this post was started) is a must-read. The rest of the Health Care Blog post and comment thread is also recommended reading, but first a couple more anecdotes.

Christine's comment in January received this response in the wee hours of this morning, from Todd Fraser.

Could not agree more Chris|. 

We had a similar experience with my partner’s family member. The process of managing her father did not go well. As someone from the industry, it was easy to see where it went off the rails, and the various holes in the cheese lining up. 

But after presenting it all to the hospital, clearly identifying that we wanted nothing more than to help them improve their service to the community, we were given nothing more than excuses and buck shifting. 

Fundamentally, our profession needs to smarten up its act and remember what it is here to do. Serve the public to the best of their abilities. And sadly, to do so means being honest with yourself about your performance.

To which I had to add the following...

Todd, something tells me that cases like yours and Chris’ are more numerous than many want to believe. That link at Christine’s post referring to an explosion in the number of for-profit hospice enterprises is not the good indicator it should be. In my post-retirement job as care-giver I have seen several hospice situations, and not all are what I would call admirable. They range from not-for-profit residential settings at the luxury end to the most minimal collections of on-call nurses who mostly put in their time and move on to the next client. 

I am at a loss to know the way out, but I do know that competition for that little $5000 hospice benefit offered by Medicare (or whatever it is) is driving the wrong kind of results. Just a couple weeks ago I heard a story form a friend that his father-in-law was in a residential hospice setting and they had the nerve to call and tell someone in the family that they were not prepared to keep anyone unless they had less than two weeks to live. That, of course, is not legal and the person was prepared to take legal action against the hospice company, but the man did, in fact, soon die. 

All this is “anecdotal” as are your and Christine’s stories. But there is more here than meets the eye, and as you said, the profession needs to remember what it’s here to do.

In the interest of completeness, this is Christine's account of their unhappy hospice experience as recorded at her blog, Kapsacare Resources. 
(Go to the other link for Christine's backstory.) 

I don’t know how the legion of health care types all decided my mother was hospice fodder without a terminal illness. Perhaps they used the data analysis dreamed up by Health Catalyst, discussed in a past blog. (Many of Health Catalyst’s key people are former employees of the well-known health care system where my mother was hospitalized.) Maybe the “cost reduction through managing populations” algorithm ended in a Hopeless Case box at the bottom. 

Eject to hospice. 

Any thought of palliative care was jettisoned early. Palliative care and hospice have become synonymous. I didn’t know the full implications of signing hospice certification for my mother. I had no idea I was signing away any possibility that any physician would take remote interest in her care again. By the time I realized what had happened, she was too sick for it to matter. 

The events as they unfolded:

• My mother was assigned a nurse practitioner as attending “physician” on admission to the facility. I’m an NP, so was comfortable with this idea. Until this NP proved less than expert.
• My mother developed a raging urinary tract infection from a botched catheterization. After the attending NP proved unable to manage this problem, I asked for a physician to see my mother. Was told no physician was available.
• I then asked for the hospice medical director to see my mother. Impossible. The medical director lives and practices out of state, almost 400 miles away from the hospice where she has legal, clinical and moral obligations.
• Requested the medical director’s physician-designee examine my mother. Impossible. No such person existed. All in violation of state and federal regs.
• The facility made a 911 call and my now-delirious mother was summarily shipped to the emergency room. Where the ER doc, with breathtaking arrogance, told me my mother should be in hospice. When I asked whether he’d read the intake notes, he walked away.
• With Mom screaming in delirium down the hall, he came back to tell the family he would discharge her. I said, “She isn’t stable.” He told us there was nothing further he could do and he would discharge her. “You discharge her and we’ll file an EMTALA in the morning.” (EMTALA is the acronym for Emergency Medical Treatment and Labor Act, a federal law that prohibits hospitals from discharging or transferring unstable patients or women in labor. Violations can incur hefty penalties for hospitals and doctors.) He walked away again.
• He came back a few minutes later, having found a bed. The palliative care specialist who had admitted Mom earlier in the fall agreed to assume her care on the condition she is discharged to his hospice agency. This physician saw my mother on November 25th, the day before she was discharged. It was the last time she was ever seen by a physician.
• Mom returned to the assisted living facility where she had been for a year and liked. Now she was a hospice patient and bedridden, the facility was willing to take her back. Go figure.
• Her care was given by nursing assistants. There were brief visits by a registered nurse. Based on their observations, the doses of narcotics and tranquilizers given to my mother increased sharply and quickly. Requests the doctor call me to talk about the medications went unanswered.
• Mom was stuporous the last time my brother and I saw her alive, the evening before her death. Perhaps it was disease. Perhaps it was a drug overdose. Or both. We’ll never know. We didn’t say good-bye, there was no chance.

The number of for-profit hospices has risen from 756 to 1828 (that number is likely outdated) from 2000 to 2009. The public education efforts to convince Americans of the desirability of hospices, advance directives and “good deaths”—whatever those may be—have soared along with hospice profits. 

My mother did not have a “good death”. My brother and I are left with gut-wrenching questions for which there are no answers. 

My mother’s death certificate was signed by a physician who hadn’t bothered to see her in almost two weeks. It lists multi-organ failure as the cause of death. The physicians responsible for her care suffer organ failure, too. The heart.

Her threat to file an EMTALA complaint turns out to have been the best weapon available to force hospice to do what they are in business to do.  In the case of my friend whose family faced a similar situation with his father-in-law's case, that threat would have served the same purpose.

Fortunately he, like Christine, knew his rights and was prepared to confront hospice with that threat. But health care in general and hospice in particular should never need to be made worse by avoidable developments like those.

I note them here as words to the wise until the system rectifies what appears to be a growing problem.

~~~~~~~

[Original post begins here.]
This morning's notice of Google's "Inactive Account" feature sent me looking for a blog I had followed a year or two ago specifically focused on end-of-life issues. I never found the blog I was looking for but was surprised to see a host of related links, most of which have come up recently. 

What follows is part of what I found. The amount of material that has appeared in just a year or two is truly amazing.
This is a very long post. To save reading time and trouble I have copied whole contents with a single link to sources instead of including all the secondary links.


Aggressive Care Still Common For Dying Seniors, Despite Hospice Uptick  by Alvin Tran, February 05, 2013

This is an NPR story from a few weeks ago. I see they are a partner with Kaiser Health News. The Kaiser People do a superior job of health news reporting and have been doing so for years. I'm very impressed with Kaiser. Unlike most private sector outfits they seem to focus on mission more than revenue, the mark of a real public service oriented corporate conscience. 

Although federal data show that fewer Medicare beneficiaries are dying in hospitals that doesn't mean they're getting a lot less medical care in their final days, new research suggests.
Even as deaths in acute-care hospitals declined between 2000 and 2009, the use of intensive care units in the final 30 days of life increased, as did short-term hospice use. The rate of changes to care for these patients, such as transfers within the last three days of life, also increased. 

To gerontologist Joan Teno, the study's lead author, the increased use of hospice is encouraging but she worries about when seniors are referred to hospice care. 

"While there is greater access to hospice services, there's also more ICU, more repeat hospitalizations, and more late transitions in the last three days of life," Teno said during an interview. "The good news is that we are referring to hospice. The bad news is we're referring to hospice in the last hours of life." 

The findings appear in the latest issue of JAMA, the Journal of the American Medical Association. 

Researchers from the Warren Alpert School of Medicine at Brown University and elsewhere analyzed of Medicare claims data from a random sample of more than 800,000 seniors 66 years and older, who died in 2000, 2005 and 2000. 

While a 2010 report by the Centers for Disease Control and Prevention had looked at where patients died, researchers in this study examined beneficiaries' medical claims during the last 180 days of life. 

Hospice use at the time of death increased from nearly 22 percent in 2000 to 42 percent in 2009, the authors reported. But short stays of three days or less went from 22 to 28 percent. About 4 in 10 of those short stays came after time in a hospital ICU. 

The increase in the number of short hospice stays following hospitalizations, suggest that aggressive care at the end of life is growing, Teno says. "We really need to improve our referral patterns to make sure that people are receiving the appropriate and timely access to palliative care services at the end of the life," she said. 

Jon Radulovic, the vice president of communications of the nonprofit National Hospice and Palliative Care Organization, says the study adds to concerns about end-of-life care. "With the number of patients (in hospice) who die under seven days or less, it's questionable whether the patient and family caregivers are able to fully benefit from the unique services that hospice offers," he said. 

With some provisions of the federal health law set to take effect in 2014, Teno sees an opportunity to hold institutions more accountable. 

"The opportunity under health care reform is to really pay for quality and not pay for another day in the ICU," she said. "Our fee-for-service system has probably resulted in overutilization of care and really, what we want to do is get the right care at the right time, for the right person, at the right location. And we want to respect the patient's right to choose."

Slowly Dying Patients, An Audit And A Hospice's Undoing
This post by Randy Dotinga, January 16, is from Kaiser Health News mentioned above. 

As I read recalled my experiences as a care-giver in several hospice circumstances -- some at home, others in institutional settings -- including the nursing home where my mother died a few years ago.

For obvious reasons I have a bias in favor of non-profits.  In my opinion that sector of health care has not been scrutinized closely by any studies.  All operations, including non-profits, must be "profitable" to survive.  

But there is an accounting difference between operational profits and EBITDA (Earnings Before Interest Taxes Depreciation and Amortization). This is more than an academic distinction and bears directly on how efficiently the revenue stream is managed and disbursed. The difference is huge.

SAN DIEGO -- Death sometimes came slowly at one of the nation's largest and most respected hospices. That's not unusual. But here's a twist: For some patients, it came not at all.
While hospices normally treat patients with fewer than six months to live, San Diego Hospice often served people who had much more time left. 

Not anymore. In the wake of an ongoing federal audit and an internal investigation, the nonprofit hospice's patient load has dropped by hundreds as it targets its services more tightly to only those within the six-month window. 

The resulting cash crunch forced it to cut 260 workers and close a 24-bed hospital this month.
Across the country, hospices with generous admissions policies may find themselves on life support too. Medicare, which heavily funds hospice programs, is cracking down on the industry's growing habit of embracing those whose deaths aren't imminent. 

It's not clear how many hospice programs are being investigated. But there's definitely an increased level of scrutiny, said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. 

Indeed, the Health and Human Services Office of the Inspector General has, in recent years, made such investigations a priority. In 2012, for instance, the agency's work plan included an ongoing review and assessment of the "appropriateness of hospices' general inpatient care claims." In addition, the 2013 plan emphasizes the need to examine the relationships between hospices and nursing homes: "OIG found that 82 percent of hospice claims for beneficiaries in nursing facilities did not meet Medicare coverage requirements." 

"We're facing a time of much more extraordinary focus on guidelines and regulations," said Kathleen Pacurar, president and CEO of San Diego Hospice, who's had to cut her staff by about 30 percent. 

Why this spotlight on hospice? Because it's a booming business, a $14 billion industry that served an estimated 1.65 million people in the United States in 2011. That's about 45 percent of all those who died that year, the hospice association estimates. 

Medicare paid for the hospice benefits of 84 percent of those patients. When used properly to provide dying patients with palliative care instead of continuing futile medical treatments, hospice care can save the government money, research has shown. 

At San Diego Hospice, the trouble began when federal officials launched an audit of 2009-2010 admissions that's still ongoing. An internal investigation at the hospice revealed that it didn't always properly document that patients had six or fewer months to live, according to Pacurar. 

The federal audit led Medicare to temporarily suspend reimbursements to the hospice in November; the hospice briefly stopped taking new patients. 

In a statement responding to questions about the San Diego case, the Centers for Medicare & Medicaid Services said: "We take seriously our responsibility to safeguard taxpayer dollars from fraud and abuse. We are working with this facility to ensure that the immediate needs of patients are being met, while actively monitoring billing to prevent abuse or fraud." 

Overall, San Diego Hospice's patient load has dropped from 1,000 to about 600, although Pacurar said it continues to accept all eligible patients. She said the numbers have dropped for multiple reasons: the hospice admits fewer patients due to tighter criteria, it has discharged about 100 patients who aren't considered to be within six months of death and it's getting fewer new patients due to bad publicity. 

Things may get worse. In its statement, CMS added that any overpayments must be reimbursed to Medicare. Pacurar said she thinks the government won't go as far as to actually cripple the hospice, but there's no way to know. 

"That's the hard part about what our organization is going through," she said. "We're one of the first to go through such an extensive audit, and there's the unknown of what they're looking for."
How did this mess happen? The big problem appears to be the hospice's tendency to not kick out patients when they lived longer than six months. 

"I was talking to my staff the other day, and I said to look at the percentages of patients who are here over six months," Pacurar said. "One of my staff members said, 'I think it's a really amazing thing when we have patients who stay for a long time because it demonstrates that whatever we're doing, it's prolonging their lives.'" 

And therein lies the rub. If patients recover, Medicare expects them to leave the hospice program. Patients can stay in a federally funded hospice program for more than six months, but only if they're re-certified as still likely to die within six months. 

"It's a catch-22: Oftentimes these patients have extended prognoses because we've been in there working with them," Pacurar said. 

In 2011, for instance, 475 out of the San Diego Hospice's 3,700 patients -- 12.8 percent -- stayed for longer than 180 days, according to California state data. The hospice said these figures appeared to be correct.

Another wrinkle: Medicare pays a set amount each day a patient is in hospice, ranging from $153 for routine care to $896 for around-the-clock assistance. Even with the varied pay levels, it's hard for hospices to make money during the time-intensive periods when patients are first enrolled and in the final weeks and days of their lives. Instead profits usually come during the intervening periods when the patients require less attention. That creates an incentive for hospices to keep serving patients as long as possible, even for years.

"The longer a patient stays, generally speaking, the better the hospice is able to deal with those costs and probably has a greater opportunity for a higher financial margin on that patient," said Theresa M. Forster, vice president for hospice policy and programs at the National Association for Home Care & Hospice, a national trade association for home care agencies, hospices and home care aide organizations. 

Pacurar said San Diego Hospice didn't have financial benefits in mind when it allowed patients -- including those treated at home -- to continue receiving services even if they weren't expected to die soon. 

To make things more complicated, the evolution of hospice care has made it more difficult to estimate how much longer hospice patients have to live. 

When the hospice movement began about 40 years ago, it focused on cancer patients, whose remaining months of life would often be fairly clear. Now, the hospice movement embraces a wider range of people considered to be terminally ill, including those with conditions like heart disease and Alzheimer's disease. Overall, it's harder to predict when those patients will die compared to those with cancer. 

"That's where it's started to get more gray," Pacurar said. "The industry became much broader in the patients we took on and therefore the prognosis became more challenging." 

Another twist: It's no secret to hospices that certain kinds of patients are more expensive to treat (such as those with cancer) and others are cheaper to treat (those with Alzheimer's and those in nursing homes). 

In fact, a 2011 Journal of the American Medical Association study found that for-profit hospices were more likely than their nonprofit counterparts to find ways to avoid enrolling more expensive patients. "[T]hose hospices serving the neediest patients may face difficult financial obstacles to providing appropriate care in this fixed per-diem payment system," the study said.
Another study, this one published in Health Affairs, reports that many hospices refuse to accept patients who require expensive types of treatments, such as chemotherapy (which can be used to lower pain levels), intravenous feeding and blood transfusions. 

Hospices are under federal scrutiny for more than their choice of patients. 

In 2011, Bloomberg News reported that the growth in hospice has been fueled by enrollment bonuses to employees and kickbacks to nursing homes that refer patients. Investigators alleged that this led hospices to accept patients who weren't eligible for the service.

While Medicare is focusing on the problem of patients who linger in hospice, Schumacher of the National Hospice and Palliative Care Organization pointed out that a third of patients only receive hospice care in the last week of their lives. "That's one of my greater concerns," he said. "They don't receive the full benefit of hospice services."

Pacurar, of San Diego Hospice, said another group of patients needs more attention: those who are dying but aren't within that six-month window that makes them eligible for hospice care – in other words, the patients that her hospice used to be willing to treat.

Her hospice will no longer be treating them, at least until they're closer to death. They will remain under the care of their regular physicians.

"What do you do with patients who maybe aren't dying tomorrow, but have got a whole year or two where they need a higher level of care?" she asked. "You're seeing healthcare try to figure out that gap."

More People Are Dying At Home And In Hospice, But They Are Also Getting More Intense Hospital Care
Howard Gleckman wrote this for Forbes in February. 

This is one of the few places I have seen reference to Medicare Advantage, the private sector version of original Medicare. I don't know the exact numbers (and I'm sure they are a rapidly moving target) but something between a fourth and a third of Medicare beneficiaries have opted for Medicare Advantage instead of original Medicare. This is important because when someone enrolls in MA their Medicare card is of no further value. Their care is then handled completely by insurance company participating. It is managed care, whatever that means. 

More people over 65 are dying in hospice care and fewer are dying in hospitals. But this good news is tempered by a very different story. People are also being hospitalized more frequently in the last three months of their lives, are more likely to spend time in intensive care units, and are often receiving hospice care for just a few days before they die.

In a new study in the Journal of the American Medical Association (JAMA), Joan Teno and colleagues painted a nuanced picture of end-of-life care in the U.S. A key finding: Simply knowing where someone dies may not say much about the care she received at the end of life. 

 As Teno and her colleagues note, one patient may spend her final week at home, but her last day in the hospital for pain control. Another may spend her last week being moved from home to hospital to nursing home and back to the hospital. Both die in the same place but their experiences are very different.  

A recent report by the Centers for Disease Control and Prevention found more people are dying at home. And Medicare is considering site of death as a quality measure for end-of-life care, on the theory that dying at home may be less stressful than dying in an institution.

But Teno tells a much more complex tale. She and her co-authors found that about 33.5 percent of Medicare beneficiaries died at home in 2009, 10 percent more than in 2000. Only about 24.6 percent died in the hospital in 2009, down one-quarter from 2000, while the percentage of people dying in nursing homes was little changed. 

At the same time, about 42 percent died in hospice care in 2009, nearly twice the percentage in 2000. For those of us who believe in the importance of palliative care at the end of life, this is all good. But it isn’t the whole story. And the rest is less positive.

Transitions from one care setting to another in the last 90 days of life increased by 50 percent, from an average of two moves in 2000 to three in 2009. Ten percent faced a care transition in their last three days in 2000, but 14 percent were moved in 2009. While 24 percent of those who died used the ICU in 2000, 29 percent received intensive care in 2009. More than 11 percent had three or more hospitalizations in the last 90 days of their life.

While these patients spent a bit less time in the hospital, they also spent more days in the ICU. Most disturbingly, dementia patients spent more time in the intensive care in 2009 than in 2000. Finally, while hospice use increased, more than 28 percent of hospice users were enrolled for three days or less. Medicare’s own attitude towards hospice is…complicated.

There are some big caveats to this study. The first is that it includes only patients in traditional fee-for-service Medicare, not Medicare Advantage. It will be interesting to learn whether experiences are any different for managed care patients.

Second, the study looks retrospectively at all patients who have died though in some cases nobody would expect them to receive end of life care. Imagine, for instance, an active 65-year-old who breaks a leg skiing. She has the leg repaired in the hospital, goes to a skilled nursing facility for rehab, and has a completely unexpected heart attack. She is returned to the hospital, where she dies in the ICU. She’d appear as someone with multiple care transitions at the end of life, though such care may have been completely appropriate.

But many people don’t die that way. They suffer from chronic diseases, such as heart or lung disease or dementia, and death is often not unexpected (by them or their physicians). Teno’s study tells us there is still a lot more we need to learn about how to deliver care at the end of life.

For a Hospice Pioneer, Still a Tough Call
Author and journalist Paula Span contributed this to the New York Times a couple weeks ago.  

Family, friends, colleagues and parishioners said goodbye to Paul Brenner on Monday. He served as the associate pastor of St. Mark’s Lutheran Church in San Francisco, where his funeral service was held. 

Mr. Brenner’s voice had already weakened when I spoke with him briefly a couple of weeks ago. He was only 73, but 18 months of declining health and months spent in hospitals and nursing homes had sapped his strength. Still, when I asked how many people he thought he had helped to die, I could hear a quiet pride in his response. “Oh, thousands,” he said. 

For more than 25 years, starting in the late 1970s when the word “hospice” still drew blank looks (and years before hospice became a Medicare benefit), Mr. Brenner led nonprofit hospice organizations. Yet when his health faltered, choosing to become a hospice patient himself proved unexpectedly difficult. That’s what I wanted to talk about.

His hospice initiation began unconventionally in Jacksonville, Fla.: A member of the church he led was dying and her doctor wanted to move her from a hospital to a nursing home. “She was very upset about that,” Mr. Brenner recalled. After discussions with a nurse, also a parishioner, and a young doctor, “I said, ‘Why don’t I just move you into my home?’ It was clear she’d live only a short time.” 

With the nurse and doctor helping, “we kept her until she died on Easter Sunday,” he said. 

“After that, even though we didn’t know much about it, we decided to start a hospice program.” 

What’s now Community Hospice of Northeast Florida began with eight patients, 14 professional volunteers and Mr. Brenner as C.E.O. “We organized as best we could,” he said. “God seemed to direct and guide us.” 

Mr. Brenner went on to take leadership roles at Hospice of Palm Beach County; Montgomery Hospice in Rockville, Md.; the Jacob Perlow Hospice at New York’s Beth Israel Medical Center; and Children’s Hospice International. 

“We’d known hospice all our lives,” his son Matt Brenner told me, picking up the narrative. Phrases like “quality of life” came easily to him; he’d vacated his childhood bedroom to accommodate that first Florida patient. 

The younger Mr. Brenner now lives in San Francisco and was pleased when his father — who’d come out as a gay man two decades ago — moved there to join the ministry at St. Mark’s, where he paid particular attention to seniors. “His passions had been reinvigorated,” Matt said. “I hadn’t seen my dad with that much energy in a long, long time.” 

Perhaps that explains why, despite their family’s history, turning toward hospice was a tough decision. The elder Mr. Brenner underwent a supposedly simple outpatient procedure in 2011, acquired an aggressive staph infection, then was diagnosed with colon cancer and received radiation and chemotherapy. A cascade of problems followed: extreme pain, delirium, deep bedsores, a colostomy, extended stays in hospitals and nursing homes. 

Hospice had always represented “a rope that was there for us to grab when we needed it,” Matt said. But they waited to grab it for 18 months. 

The fact that many terminally ill patients don’t enter hospice care until death is imminent has plagued the field for years. Multiple factors play a role in this pattern: public misunderstandings, tight-lipped doctors, families in denial,hospice policies and Medicare regulations that may discourage its use.Douglas White, a University of Pittsburgh bioethicist and researcher, talks about “the powerful desire not to be dead.” We all have it. 

The Brenners had it, too. “He’d been living with joy and purpose,” Matt said of his father. “We’d been offered the hope that he might get better, and we didn’t want to let that go.” 

A hospital was virtually pushing him out the door when Paul told his loved ones he was tired and had fought long enough. That is when they called Sutter Care at Home, a local hospice, and on Christmas Day brought him back to his studio apartment overlooking the city. 

Once they did, things got markedly easier. “We settled into a peaceful routine,” Matt said. “No more beeping, no more people running in and out.” They hired round-the-clock aides — expensive, but necessary — and relied on the hospice staff for comfort care. 

Some readers here have argued that when their time comes, they want a hospital room and a professional staff, not a home death that will burden their families. About a third of people over 65 still do die in hospitals 

The Brenners saw it differently. In Paul’s apartment they had two months in which to share meals, watch nature documentaries on TV and enjoy visits from friends. “The comforts of home,” Matt said. 

On Feb. 7, they hosted a party for 24 well-wishers, who came in shifts to say goodbye. The church organist played hymns on Paul’s piano, concluding with “Over the Rainbow.” “Everyone was singing and crying,” Matt recalled. On Feb. 11, Paul — who had baptized both his sons — performed the much-delayed baptism of his 4-year-old granddaughter from his hospital bed.
On Feb. 22, his sister and his sons kept a final vigil, with Bach on the CD player as he’d requested. “When the music stopped, his breathing got shallow,” Matt said. “He left us with a smile on his face.” 

In his dreams, Matt told me, he sees his young, healthy father romping with his sons as he used to. “Death is the final stage of growth,” he’d always told them, and they have come to believe it and to feel both loss and peace.

Hospice -- A Dying Person’s Guide To Dying
This is one of the most comprehensive lists I have found, Copyrighted in 1997 by the American College of Physicians. 
Take a look at their list of resources and information.  

This is addressed to someone considering hospice for himself -- not survivors, supporters, caregivers or family members. 

By thinking ahead about what could happen - and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. What I have to say is for the person who, like myself, is dying. We, too, need to plan - to think ahead in order to fashion, out of the time remaining, the best of what is possible. 

As I am dying from cancer, I have learned some things that I think are important for a dying person to know in order to plan. I am a physician, but what I have learned has little to do with my medical training. I have learned this as a person; perhaps my medical experience was helpful because I have paid close attention to the actions and reactions of people around me. 

First, it is likely that you will be surrounded by persons who mean well but, in the end, you must die your own death. Dying can be considered a journey one takes alone with a crowd. Family and friends are the first to gather around you, and they offer the most comfort.
Here are some pieces of advice to remember in those first few days after you learn the bad news. 

(1.)  One or two people - probably family members - will make enormous personal sacrifices to help you. If you are married, your spouse is likely to do this, but don’t be surprised if others - a daughter, a brother-in-law, or even a friend, step forward to offer extraordinary help. Be grateful, and accept help, from whatever source, graciously 

(2.)  Some family members, but especially friends, will treat you differently. Even before you show signs of serious illness, people will have a different look in their eyes as they talk with you. You might consider this patronizing or over bearing. It may be difficult, but it is best to ignore their attitudes and treat them as you always have. They will come around to their normal selves when they get over the shock. 

(3.)  Happily accept all gifts from family and friends. It makes them feel better and you might receive something you really like and appreciate. 

(4.)  Don’t be afraid to ask to be alone. We need time to be by ourselves. Some family and friends may feel driven to fill your every waking moment with activities; perhaps they are trying to “take your mind off” your impending death, but they may also be doing the same thing for themselves. 

(5.)  Be your own counsel. No one, including your physician, religious counselor, spouse, or friends can understand 100% what you want and need. It surprised me that some people seemed to “bully” me with advice when they learned that I was terminally ill. We should remember Immanuel Kant’s advice to avoid accepting someone else’s authority in place of our own powers of reason. We are the ones who should be considering alternatives and making choices. We can, and should, ask for advice. Make telephone calls and read books - but ultimately, we should decide. 

(6,)  Slow down and ask your family and friends to slow down. There may not be a lot of time, but there is sufficient time in all but the most extreme cases to think, plan, prepare.

There are things you need to know from your doctors and other health care staff. You need not ask all of the following questions or ask them in this order. Still, these questions deal with crucial issues that need to be addressed and, hopefully, resolved. 

What is my disease?                                                                                                        You should find out as much as possible about your disease. What is it? How will it affect me? And very importantly, how will it cause my death? First, ask your physician. Additionally, many popular books are available in bookstores and libraries which can give you a basic sense of your disease process and disease terminology. National organizations, such as the American Cancer Society, and often local hospitals can provide brochures, video tapes, or even lay experts to help you and your family understand your particular disease. Ignorance is not bliss; the more you and your family know, the better able everyone will be able to cope with what is happening.

Should I seek a second opinion about my disease and my condition?
Seek a second opinion! A second opinion will relieve your mind and resolve doubts one way or another that a major mistake has not been made. More importantly, a second opinion will offer a slightly different perspective that may help everyone’s understanding. Don’t be embarrassed about asking for a second opinion or think that you will make your physician angry. Second opinions are perfectly acceptable, and many physicians are happy when their patients seek second opinions. The original diagnosis is usually confirmed, and you are then more prepared to follow prescribed treatments. 

What health professional do I especially trust?
Search for and then trust in a single individual. This does not mean you should not listen to all health professionals and follow reasonable directions and advice. But focus on one individual as the final helper. This normally will be the specialist physician in charge of your case. However, you may know your family doctor better than you know your cancer specialist. If this is the case, your family doctor may be the one to choose. But, if you do, make certain that your family doctor knows that he or she is serving that role
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Why am I going into the hospital?
There are four basic reasons why a terminally ill person would be hospitalized, but not all four necessarily apply to every patient. They are: (1) to confirm the diagnosis and analyze how far the disease has progressed; (2) to provide treatment that can only be given in the hospital, (3) to treat a severe worsening of the disease; and (4) to treat the final phases of the disease, if this cannot be done at home or with hospice. You should know which applies to you so that you can understand why things are done to you and what benefits you can expect. 

What are the hospital rules about terminally ill patients?
Hospitals and medical centers have written rules and procedures that outline in detail how the hospital will deal with terminally ill patients. These are not “treatment” rules. These protocols or guidelines, as they are called, deal with how to handle end-of-life issues, such as whether the patient (or the patient’s family speaking for the patient) wishes extraordinary “heroic” measures to be used to keep the patient alive. Hospitals are obligated, and very willing, to share these protocols or guidelines with patients and families. Consider getting a durable power of attorney in which you name one or two people to make decisions or choices on your behalf if you should be incompetent or incapable of making decisions yourself. Read the “Do Not Resuscitate” policies of the hospital. Death should be peaceful, and you should not ask for anything that gives you prolonged agony.
You should be aware that nurses and other hospital staff may not know that you are terminally ill. This fact may not be written in your chart, which can lead to conflicts between families and hospital staff. The family may assume that everyone in the hospital shares their grief, and will not understand the workaday attitude of nurses, dietitians, or others. It is okay for the family to tell the hospital staff that you are dying since they may not know. 

What resources are available from the health care community?
Most hospitals have many services available to patients and families to help with nonmedical aspects of your care. These include social services and psychological, financial, and religious counseling. For example, a visit, before hospitalization, to the hospital financial counselor by a family member to check on insurance and payment plans is a wise move. In the rush to admit a patient, important information may not get recorded. A 15 minute meeting with counselors can avoid stress and anger over incorrect bills. Similarly, meeting with the hospital social worker may be very helpful in arranging home care. Use these services!

What can I do if it seems that nothing is being done or if I don’t understand why certain things are done to me?
Hospitals, clinics, and doctors’ offices can be confusing places. You can begin to feel you have no control over what is being done to you, and you may wonder if anyone really understands your case. This is the time to call the health professional who is your primary contact - the one you decided you fully trust - your physician specialist or family physician. Ask this person to explain what is going on. Have him or her paged or even called at home if your situation is very upsetting. It is the physician’s responsibility to help you, and he or she will not be angry that you called. 

How will I and my family pay for my treatment?
Financial professionals employed by hospitals understand billing and what may or may not be covered by Medicare, Medicaid, or private insurance. Consult them and be sure to ask every question to which you and your family need an answer. It is important that you and your family do not panic over billing. Ask for advice and help. 

Sometimes the hardest part about dying is the effect it has on your family and friends. Helping them deal with your death helps you find peace and comfort. If you are not at peace with your death, ask the health professional you especially trust to help you find peace. That person will help or will get whatever help is needed. After all, it is the goal of all health professionals, to give you comfort and health during life and peace to you and your family at death.

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The Plan Now, Die Later-Peacefully Series of Videos
If the reader thinks they have already waded through more than they expected, I have news for you. You haven't even started. This series of videos (and no, I haven't sat through them all) appears to be well done and appropriate. To cut to the chase it is a thoughtful and professional approach to what some have called assisted suicide or physician-assisted suicide. 

I haven't "gone there" in my own thinking but I am keenly aware that suicide is one of the many ways that people die. More active duty service members, for example, have committed suicide than were killed in combat in Iraq and Afghanistan. 

Not related to suicide but pertinent to the subject of death and dying, Mark Shields, one of the commentators on PBS News Hour, did some  homework following the Newtown, Connecticut mass killing and determined that gun deaths since the assassination of Robert Kennedy in 1968 exceeds the number of people killed in all the wars in US history.  In light of those statistics, any discussions of death and dying should not be taboo.

Last year one of my high school killed himself. During my lifetime I have been aware of several other suicides that occurred which impacted people I knew. Physician-assisted suicide is a controversial subject, illegal in many states, left to common law in others and legal in Oregon and Washington.

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This is a very long post but the subject is serious enough to merit the attention. Death and dying is, as Joe Biden would say, a Big F***ing Deal.  Here is a great TED talk that impressed me.

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In addition to the usual options for disposing of the body (traditional cemetery, cremation and a small trend to "natural burial") a few enterprising start-ups now offer composting. This Facebook link links a NY Times story about composting. The first comment is a quote from the Times link.

Alternative burial -- composting.>> Weeks or months later, survivors could collect some of the compost to use as they...
Posted by John Ballard on Monday, April 13, 2015