The Amateur's Guide To Death & Dying
Enhancing Life Near Death
Maori digital stories about caring for kaumatua (elders) at the end of life. Teaching resource for nursing students, nurses and other health professionals who want to know more about Maori whanau (family) end of life needs and priorities.
When a patient is initially referred to hospice care, usually by their physician or a case worker within the hospital, they are usually given a list of hospice agencies in their area to choose from. Sometimes these referral sources have a particular agency that they prefer and their recommendations shouldn’t be taken lightly; they are in position to see how well a particular agency cares for their patients.
However, as with any health care decision, you should be as informed as possible in order to know that you are making the best decision for you and your loved ones.
All hospice agencies work within the guidelines set forth by Medicare. The basic services they provide are the same across the board. This may leave you wondering why it would even matter which hospice agency you choose. There are differences, however, and they’re often tucked away in the small details.
It’s important to do a little research from the start to find where those differences lie.
To find out what services hospice agencies provide, see What is Hospice Care?
Your first interaction with a hospice agency may happen over the phone after they receive your referral information and call you to set up an appointment. It may happen in the hospital setting when a representative from the agency comes to evaluate your loved one and offer information.
It may be initiated by you. Regardless of how your initial interaction takes place, there are some important facts to gather from the start.
Hospice care can take place in the home, in a nursing home or in a hospital. Very few hospices have inpatient facilities, which means that most people receive hospice care via an independent agency. So, probably the most important question you can ask a hospice facility is related to the location of their nurses.
Just to clarify, it really makes no difference where the agency’s office is located, but it makes a huge difference where the nurses are located. I used to work on-call for a large hospice agency that covered three counties, over 200 square miles. On weekends, I covered the entire area with only the help of one LVN (licensed vocational nurse). Consequently, I would sometimes be with a patient in one county and get a call from another patient who had a crisis in another county who then had to wait two hours or more until I was able to get there.
Knowing how far away the on-call nurses live from you and how large of an area the nurses cover is essential to knowing how responsive they will be to your urgent needs. Keep in mind that some hospice agencies have multiple branch offices that could be 50 miles or more apart from each other. Make sure that if the agency your looking at has multiple branch offices that they also have a separate on-call nurse covering each one, and that the on-call nurse covering your area also lives in your area. If you have a crisis in the middle of the night or on the weekend, the last thing you want to do is wait two or more hours for help.
Complete Article HERE!
By Jaki Fisher
HAVE you heard the term “death doula”?
You may have. It’s been bandied about a bit recently, after Imogen Bailey recently wrote an article for Mamamia about training to become one.
In the article she mentions that musician Ben Lee is also a death doula.
In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.
A death doula is someone who helps at the other end.
Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.
JENNY was the first person who asked me to be with her when she died.
A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.
Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.
After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.
She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.
At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.
Jenny was the first patient at the hospice to take part in an end of life vigilling program, No One Dies Alone (NODA). Based on one that began in the US, theoriginal was started by a nurse called Sandra Clarke who, after leaving a lonely old patient who begged her to stay, returned after her rounds to find he had died alone. She couldn’t forget this and eventually set up this no-fuss, volunteer-run program that has been implemented in many large hospitals across the US.
With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.
At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.
LAST MOMENTS
I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.
Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.
I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.
She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.
We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.
Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.
After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.
DEATH DOULAS
In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.
My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.
Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.
But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.
However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.
In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.
One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!
I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.
However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.
To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.
‘AN UNNATURAL INTEREST IN DEATH’
I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.
I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)
I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.
I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.
I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.
They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.
I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.
I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.
Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.
But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.
JENNY’S LEGACY
Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.
I asked her if we could talk about her after she had gone and whether we should change her
name if we did so. She was adamant — if it would help others gain a deeper understanding
about death, then we could certainly go ahead and use her full name with no changes.
We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in
today’s highly medicalised and hurried world — genuine human companionship at the end of
life, especially for those who have no one to give it to them.
Jenny’s life was certainly not in vain. She lives on in the program and touches
every patient we serve. Because of her willingness to embrace NODA, more and more
people have not died alone — this is Jenny’s precious legacy.
Complete Article HERE!
People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.
An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.
The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.
“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.
Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.
The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.
“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”
Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.
Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.
Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.
“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”
The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.
Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.
Still, he says, hospitals are just not good at caring for dying people.
“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.
It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.
“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.
Complete Article HERE!
The dying process usually begins well before death actually occurs.
Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.
As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.
As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it.
They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets.
They may also undertake the five tasks of dying.
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there.
Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred.
Complete Article HERE!
The new patient is an elderly, diabetic lady whose heart has been teetering on the edge of failure for the past two years. She likes saying that her husband’s death broke her heart – it might have been so but at age 80, diabetes, uncontrolled hypertension and a series of heart attacks have also taken their toll. The last little while has been particularly eventful, with practically a hospital admission each month despite maximal therapy.
She sees a different physician every time to tackle her immediate problem – fluid overload on one visit, diuretic-induced dehydration the next; sky high sugars one month, dangerously low ones the next. There are short-term solutions but no overarching intent of management. Everyone, including the patient, simply skids from one disaster to the next. She looks defeated and miserable. This time, her exhausted son pulls me aside and says, “I know you are the expert, but am I alone in thinking that treatment is futile?”
He was being sensible, not cruel, as he feared. He was right that treatment was futile and what was missing was a narrative of his mother’s long illness that included death as an end point. Avoiding even the mention of mortality, we were doing the patient, her family and ourselves a disservice.
His words brought home two truths. First, that patients are entitled to more thorough explanations and better conversations about their health. Second, that we are seeing an emerging theme in medicine, where patients and families are seeking to define the boundaries of care when doctors either don’t or won’t.
In fact, the timeless business of dying has never had a higher profile, which is why the results of a recent survey by the Royal Australasian College of Physicians make for sobering reading.
The RACP end of life working party, of which I was a member, surveyed more than 1,500 physicians to identify their knowledge and practice of advance care planning and end of life care. Unsurprisingly, the majority reported routinely caring for patients who were likely to die within 12 months. On a weekly basis, one third of doctors observed provision of treatments inconsistent with known patient wishes and one-third observed treatment with little chance of benefit.
And while doctors overwhelmingly agreed that discussing end of life care was important, only a minority actually translated the intention into action. Barriers included a lack of time but just under half of the physicians felt insufficiently trained to undertake what is easily one of the most consequential conversations in the doctor-patient relationship. As a result, a dismal 17% of physicians expressed confidence in knowing the end of life preferences of their patients.
More than any other group, apart from general practitioners, physicians are expected to conduct difficult and sensitive conversations with chronically ill patients to define goals, and hence, boundaries, of care. A surgeon’s adroitness with the scalpel is best paired with the wider perspective of a physician who deliberates whether the patient will survive the operation. A tricky biopsy is within the radiologist’s reach but it’s the physician who asks whether it’s the right thing to do. This is not to diminish one speciality or elevate another but merely to acknowledge that our combined skills are necessary to provide appropriate and judicious healthcare.
When it comes to sustained communication with hospitalised patients about complex and chronic illness and helping them navigate the end of life, the burden on physicians has always been higher, which is why it’s a worry when as a group, they express uncertainty about their ability to provide this core component of care.
At the end of life, physicians are typically the doctors expected to explore your deepest longings and regrets, your strongest convictions and worst fears. In between, they deliberate resuscitation status, stop antibiotics, encourage palliation and provide counsel to the frazzled resident who says, “He is dying but the family wants everything done. How should I respond?”
No matter how prepared one is for the end of life, for most of us there is accompanying consternation, grief and anxiety. One might reasonably expect a physician to be the custodian of good health but also the guarantor of comfort and dignity in death. It’s clear that physicians aspire to be that doctor but confess to needing help. In the survey, a staggering 90% of physicians thought that communication skills training should be mandatory.
It isn’t, you ask. No, and it has never been. Such training in medicine, especially when it pertains to end of life care, is patchy, undervalued and considered an optional extra rather than a clinical imperative. In an era where we have mapped the human genome and talk about cancer moonshots we have consistently failed to provide not just physicians, but all doctors, with the tools to be effective communicators.
It’s often feared that in discussing mortality a doctor will extinguish hope – and there is indeed a tension between maintaining hope and telling the truth – but patients tell us they value honesty and doctors know it’s the right thing to do.
Becoming a tactful, sensitive and honest communicator is a lifelong process but it’s important enough that it shouldn’t be left to chance. But this is exactly what medical schools and hospitals largely do. And then we lament that despite all the advances in medicine, doctor-patient communication remains a fraught problem that underpins a significant majority of healthcare complaints.
Hospitals hate removing doctors from the floor because it costs money. Many are dubious that communications training can alter a doctor’s fundamental approach to patients, so they end up dealing reactively with problems.
But promoting better communication can influence organisational culture by signalling to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound or interpreting an ECG.
Doctor-patient communication has long been viewed as an indulgence that comes at the cost of service delivery. Fire training is mandatory as is training in cultural sensitivity. It is mandatory to know how to resuscitate a patient but not how to broach end of life care.
Patients are increasingly taking charge of their needs and concerns at the end of life and physicians will be forced to listen and respond accordingly. It’s hard to find nine out of 10 doctors agreeing over anything. If they are clamouring to become better communicators, it’s time we took note.
Complete Article HERE!
By Peter Whoriskey and Dan Keating
The influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.
But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.
On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.
The typical for-profit hospice:
The quality of individual hospices varies widely. In some cases, for-profit hospices provide service at levels comparable to nonprofits, according to the review. But the data analysis, based on hundreds of thousands of Medicare patient and hospice records from 2013, shows that the gap between the for-profits as a whole and nonprofits is striking and consistent, regardless of hospice size.
“Unfortunately, a lot of people have come into the business for the wrong reasons,” said Michael Girard, who with his wife Deb owns the Circle of Life for-profit hospice in Reno, Nev. “A lot of the problems we have in hospice today have happened with the entry of what I call the ‘vulture capitalists.’ ”
About half of Americans of retirement age will employ a hospice service before death, but public information about the agencies is meager, and many consumers are unaware whether a hospice operates as a nonprofit or for-profit.
The federal government has been trying — for years — to develop a way to measure and report hospice quality, but the effort has lagged behind other health-care industries. The Washington Post has published an online hospice guide that provides detailed information on more than 3,000 hospices.
The findings on for-profit hospices come amid repeated complaints within the industry that pressure to cut costs, combined with sparse government oversight, has led some companies to focus on the bottom line to the detriment of patients.
Hospice operators have an economic incentive to provide less care because they get paid a flat daily fee from Medicare for each of their patients. That means that the fewer services they provide, the wider their profit margin.
Industry advocates warned against using the findings to rule out care from a for-profit hospice.
“There are many, many factors in making a decision about what hospice to choose,” said Theresa M. Forster, vice president of the National Association for Home Care & Hospice, which represents for-profit and nonprofit hospices. “National trends may not apply at the local level. The key issues are the hospice’s ability to provide good end-of-life care.”
Through a spokesman, the National Hospice and Palliative Care Organization, another industry group, declined to comment on the findings.
Dave Williams, the chief financial officer of Chemed, which owns the largest U.S. hospice chain, said that for-profits offer several advantages for patients: They can more easily raise money for investments in equipment and expansion; they can achieve a size that offers them economies of scale; and, pushed by investors, they are encouraged to be more efficient.
He emphasized that size and scale matter because a large hospice can afford to lose money on some patients who may need extraordinary care.
“For large hospices that have been around a long time, the quality of care is going to be the same, whether they are for-profit or nonprofit,” Williams said. “The only way you can compete for patients and referrals over a long period of time is to provide the best possible care.”
***
The rise in hospice usage — today roughly half of older Americans who die have received some hospice care — has created a boom in the industry. In 2012, Medicare spent more than $15 billion on hospice care, which offers terminally ill patients treatment that focuses on providing comfort rather than aggressive methods aimed at a cure.
The number of hospice firms has risen rapidly, and over the past decade the growth has come almost entirely from new for-profit operations. Between 2000 and 2012, the number of for-profit hospices tripled to 2,196, according to federal figures, compared with about 1,500 nonprofit hospices, including those run by local governments.
The industry growth has been accompanied by remarkable turbulence, too. Between 1999 and 2009, more than 40 percent of hospices experienced one or more changes in ownership, according to researchers.
The expansion has been driven in large part by investors, including private equity firms, hedge funds and entrepreneurs. More than a dozen private equity firms have invested in businesses that provide hospice care, including giants such as The Carlyle Group, Kohlberg & Company, Summit Partners and GTCR.
“Hospice [mergers and acquisitions] market is red hot (peak valuation levels),” according to a presentation by financial analysts at Cain Brothers last year, which cited, among other things, the favorable U.S. demographics — more old people.
“Hospice continues to be of robust interest to Wall Street,” said Carsten Beith, a managing director at Cain Brothers.
He said the influx of private equity money has allowed the industry to expand and to fund investments in technology. The demands of investors have also pushed hospices to provide good care at lower costs and a hospice that spends less on nursing is not necessarily providing less care, he said.
“An operating model that is more efficient doesn’t translate into patient care deficiencies,” Beith said.
But some in the industry — often those in the traditional nonprofit hospices — have questioned whether the goals of a for-profit company and a dying patient are easily aligned.
“If you think as a businessman and you want to make money, you will cut and cut and cut,” said Helen Zebarth, who cofounded the nonprofit Blue Ridge Hospice in Winchester, Va., in 1979.
A former cardiac nurse, Zebarth decided to create a hospice after visiting the famed St. Christopher’s hospice in London in the mid-’70s.
Back in Winchester, she and colleagues operated the fledgling operation on a shoestring budget out of a hospital basement. At the time, hospice services had to be paid for by donations because insurance and Medicare didn’t cover it.
“It was free for everyone,” she said. “And the community supported it.”
She credits the beginning of Medicare and insurance coverage with allowing far more people in the United States to receive hospice services.
But it also turned hospice into a big business, which operates side-by-side with the visionaries remaining from the movement’s early days.
Today, the amount the Blue Ridge Hospice spends on nursing per patient is more than 50 percent higher than the state average. It offers an array of extra services, including music therapy. It accepts patients with no insurance coverage. It also built its own inpatient unit.
It pays for the extras with donations from the community and a string of thrift shops it operates.
“We really want to take care of people — that’s our goal,” Zebarth said. “That’s where we are focused.”
***
The debate over the role of for-profit companies has come up before in health care, most often with hospitals. Within that field, some researchers have found generally negligible differences between the care provided by for-profits and nonprofits.
“When simple measures of quality are used — such as mortality — we have not seen differences between the quality of for-profit and nonprofit hospitals,” said Frank Sloan, a Duke University health and economics professor.
Where the two vary, he said, is in business practices, with for-profit hospital chains more aggressively marketing other services to patients.
By contrast, significant differences appear to distinguish for-profit and nonprofit hospices.
The Post analysis is based on the 2013 cost reports and other billing data that hospices are obliged to file if they accept Medicare patients. Medicare pays for the vast majority of hospice care in the United States.
While they are not audited, the reports are supposed to reflect what the hospice spends each year in caring for patients.
The key findings:
The proportion of patients leaving a for-profit hospice is typically 22 percent, while it is only 14 percent at nonprofits.
The rate at which patients leave a hospice alive is a closely watched measure of quality.
“An extraordinarily high live discharge rate is indicative of financial motivations driving a hospice rather than patient care,” said Rich Chesney, chief executive of Healthcare Market Resources, a market research company that provided 2012 live discharge rates to the Post. (For its analysis, the Post obtained current data on discharge rates from the federal government.)
Patients may be leaving such hospices because “patients are dissatisfied with hospice or didn’t understand what they were getting into in the first place — that is, the hospice failed in the admissions process.”
The gap between for-profits and nonprofits was generally consistent even when geography, age of the hospice and diagnoses were taken into account. Older hospices of both kinds — for-profit and nonprofit — appeared to perform better than new hospices, according to the statistics.
Some previous academic studies have found other differences between for-profits and nonprofits.
Elizabeth Bradley, a Yale health policy professor, has conducted several such studies and found that for-profit hospices appear to offer less for patients: that nursing staffs at for-profit hospices had a smaller proportion of registered nurses; that patients at for-profit hospices received a narrower range of services; and that for-profit hospices were more likely to restrict enrollment of patients with potentially high-cost care.
Bradley notes that in at least one respect, for-profits do better than nonprofits: she and her colleagues found that for-profits are more likely to engage in outreach to low-income communities.
“I’m delighted that the for-profit hospices are expanding access by reaching low-income and minority communities,” Bradley said. “But someone needs to be watching to make sure that their strategies for maximizing their returns don’t end up compromising the quality of care.”
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The differences between for-profits and nonprofits even show up in what kinds of pain relief are available.
Take, for example, a specific cancer treatment known as palliative radiation.
While the treatment is not intended to cure a patient, it can shrink tumors and ease pain. It is, however, expensive to provide and hospices often lose money when they do so — in other words, it cuts into profits.
Research has shown that nonprofit hospices are much more likely to offer the treatment to patients. The odds that a nonprofit hospice uses palliative radiotherapy are 2.5 times greater than the rate for a for-profit hospice, according to the 2009 research from the University of Minnesota. The Post analysis also found such differences.
Geoff Coleman, chief medical officer at Montgomery Hospice, a nonprofit group, said that he sometimes recommends palliative radiation at times. But when he worked at a for-profit hospice, the staff was not allowed to give patients palliative radiation, he said.
“Essentially I was told, ‘We’re not going to do those kinds of therapies,’ ” he said, a decision he said he disagreed with. “The administrators were adamant that it was not in their purview. Sometimes, the smaller hospices just don’t have the funds.”
Anna Williams, 82, last year received palliative radiation as a patient of Montgomery Hospice after her oncologist recommended it.
Her daughter said that because Williams’s condition was deteriorating rapidly, it was hard to tell what effect it had on her mother, a former nurse she described as a “gentle spirit.”
“We knew it wasn’t going to save her,” said her daughter, Edie Gordon. “But the doctor said the radiation could bring her some relief. We just wanted to make her comfortable. It was something hopeful.”
Montgomery Hospice is better able to afford such care because, like other nonprofits, it receives a large portion of its operating budget from donations. About 11 percent of its $22 million budget comes from donations every year.
Given the budget pressures facing hospices, oversight is critical to making sure that financial demands do not trump patient care.
But regulatory scrutiny of hospices has lagged behind those of other health-care institutions, though Congress has recently called for more frequent inspections. And without as much oversight, hospice operators can operate in ways that benefit shareholders more than patients.
“With hospitals, whatever financial motivations to provide less or inappropriate care is more likely to be blunted by regulation and oversight and quality measures,” said Harold Miller, president of the Center for Healthcare Quality and Payment Reform. “We’re not there yet with hospices.”
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