Tag: End of Life Care

Posted on

To get married, they left Ohio

Crossroads Hospice offers the gift of a perfect day to its patients, a chance for the dying to do something they’ve always dreamed of. One man asked to ride an Indian motorcycle for his 100th birthday; an extended family went on a bus tour to view Christmas lights; a woman flew to Florida to stick her feet in the sand one last time, then died three hours after she came home.

 

 

John Arthur’s been a patient of Crossroads since March, but it wasn’t until June 26 that he settled on his notion of a perfect day. That morning the U.S. Supreme Court struck down portions of the federal Defense of Marriage Act. As he watched the announcement from a medical bed in his Over-the-Rhine condo, Arthur and his partner of 20 years, Jim Obergefell, decided that they wanted to marry.

photo2A wedding for the couple would not be easy. Because same-sex marriage is illegal in Ohio, and because the Supreme Court ruling left marriage bans at the state level intact, Arthur and Obergefell couldn’t marry here. The prospect of travel was difficult because Arthur is bedridden with amyotrophic lateral sclerosis, or ALS, a progressive neurological disease that robs patients of their ability to walk, talk and eventually breathe. Within minutes of the Supreme Court decision, the couple started working the phones, email and social media to figure out how they might legally wed.

New York was the closest to drive to, but they’d both need to be there for the license and return for the wedding. Out, they decided.

California and Washington, and the knot of northeastern states that have legalized same-sex marriage, were too far.

Maryland required only one partner to come for the license. Then a 48-hour waiting period.

It was an hour and 10-minute flight.

This might work, they decided: A destination wedding in Baltimore.

Then there was the cost.

Arthur has been unable to leave the couple’s home since March, and he’d need a medical transport plane that could accommodate a stretcher. Though hospice could provide some services, like the ambulance ride to the airport, it couldn’t cover the $12,700 cost of renting such a plane.

Obergefell asked friends if they had any connections. Instead donations poured in from relatives, friends, former co-workers, even someone in Ireland they’d met on a cruise. They covered enough of the cost to make the trip possible.

Obergefell flew to Baltimore on Tuesday, obtained the marriage license and flew back a few hours later.

And then on Thursday Arthur and Obergefell boarded a Lear jet at Lunken Airport with a nurse, two pilots trained in emergency medicine, and Arthur’s aunt, Paulette Roberts, who’d been ordained to perform weddings with the hope that she’d someday get to do theirs.

They touched down in Baltimore at 10:39 a.m. The plane parked off the runway and the pilots stepped outside.

And then, in the cramped cabin of the jet, Obergefell seated next to Arthur’s stretcher, the couple turned to each other and held hands. Roberts sat behind them and began to speak.photo3

“When I obtained ordination and license to marry people, I called my nephew John and told him I would go anywhere, anytime to officiate at his and Jim’s marriage,” she said. “He and Jim both said no. They were married to each other in their eyes, but that they would not take part in a wedding ceremony until the law of the land declared they were equal to other couples.”

“Twenty-six months ago John was diagnosed with ALS,” she continued. “Since then the amazing relationship between John and Jim has become even closer, even more devoted, even more loving – and it was pretty damn great before John became ill.”

Obergefell spoke, choking back tears. They exchanged rings. Roberts pronounced them husband and husband, and Obergefell leaned over to Arthur and kissed him.

“Let us all rejoice,” Roberts said, as she leaned forward to hug them both. “I love you very much.”

“That was beautiful,” Arthur responded, his voice thickened and slowed by his disease. “And thank you for including the word ‘damn.’ ”

The 7 1/2 minute ceremony was over, and as they celebrated with Champagne, the pilots climbed back in and prepared to leave. After 56 minutes on the ground they were headed back to Cincinnati, matching rings on their left hands, finally married after 20 years, six months and 11 days together.

“I’m overjoyed,” Arthur said. “I’m very proud to be an American and be able to openly share my love for the record. I feel like the luckiest guy in the world.”

Arthur and Obergefell’s story is a dramatic example of what gay couples who live in states that don’t recognize same-sex marriage are experiencing in the wake of the Supreme Court’s DOMA decision. Trapped between federal law that recognizes such unions and state laws that don’t, they are unsure what their next move should be.

Like Arthur and Obergefell, many of them never expected to have a chance to wed in their lifetimes. But now with the prospect of marriage so close, they are impatient with the prospect of waiting still longer for their state to allow it.

Arthur’s terminal illness added urgency to the questions that many gay couples without the protection of marriage grapple with. Ask such couples why they want to get married, and after the jokes about housewares and bridesmaids subside, the talk often turns to the dark what-ifs that reside at the end of life.

photo4What if my partner’s in cardiac arrest and the emergency-room staff won’t let me in? What if my partner’s family challenges my custody of our son after she’s gone? What if, as in the case of the DOMA plaintiff, my partner dies and I owe $363,000 in estate taxes instead of the nothing that a heterosexual spouse would owe?

Arthur’s ALS diagnosis intruded on the life the couple had carefully built together over two decades. Though they met twice, rather unremarkably, through a friend in 1992, at Arthur’s New Year’s Eve party that year they experienced what they call “love at third sight.” Within seven weeks they had exchanged rings, and that summer they moved in together. “Jim came to our wild New Year’s Eve party,” Arthur said, “and he never left.”

Through new houses, job changes and extensive travel, they accumulated dozens of close friends and enjoyed the company of family. As same-sex marriage became legal in a handful of states, people asked if they’d considered going somewhere to marry, but the notion of a symbolic ceremony with no tangible benefit didn’t appeal to them. Even less appealing was the idea of moving somewhere new simply to enjoy the right to be married.

“Jim and I met here in Cincinnati. We have established our friends and family circle here,” says Arthur. “Even though we thrive on local conflicts and the absurdity of what happens in the great state of Ohio, we’ve never seriously considered moving because to move we wouldn’t have our social base. So it’s never been a real consideration.”

“And we both love Cincinnati. It’s a great city to live in,” adds Obergefell, who works as a consultant for an IT company. “We can’t imagine living anywhere else. And leaving the support network we have wasn’t really an option. Since his diagnosis that’s been even more important because our friends our family have been unbelievably supportive and helpful, and it’s made this horrible situation with ALS much more bearable, and enjoyable, amazingly enough.”

In the two-plus years since the diagnosis, Arthur has progressed from a cane to a walker to a manual wheelchair and then a motorized one. For a time the couple drove a minivan, a vehicle they never dreamed they’d own, because it was easier for John to get in and out of it. Since the spring they’ve relied on friends to come by for visits, as leaving the house finally became too difficult.

They’ve been touched by small kindnesses at every turn: Arthur’s former babysitter who’s corresponded regularly with him, a friend’s five-year-old who drew a picture of the couple that’s now framed on the wall, the friends who’ve shown up en masse for a brief hour or two of levity.

The couple, both 47, belong to a sandwich generation when it comes to gay rights, wedged between previous generations who were often firmly closeted, and younger gays and lesbians who have grown up seeing same-sex couples on television. Arthur and Obergefell say they’ve never known discrimination personally, never had a family member reject them because of their sexual orientation, never considered it more than a small part of who they are.

“We’ve always been out at work,” Arthur said. “But we’ve never been our own personal Pride parade either,” Obergefell added.

But the lack of a marriage license took on new meaning in light of the ALS diagnosis. The disease attacks the nerve cells that control the muscles we move voluntarily. As the nerve cells die, patients are unable to move their arms or legs; eventually the muscles that control breathing are also affected. It is a cruel and relentless disease that kills most patients between two and five years after diagnosis. There is no cure.

Arthur’s symptoms began innocently enough in the spring of 2011, with a left foot that seemed to drag and slap. The couple was preparing for a trip to Finland to visit exchange students they’d hosted. When they returned he went to their primary-care doctor, who sent him to a neurologist. Though there is no definitive test for ALS, the neurologist eliminated other possibilities and told Arthur his conclusion.

“I had no idea that would be the diagnosis. It caught me by surprise,” he says, tearing up at the memory. “I just remember I came in the door and turned to Jim and said, ‘I have ALS.’ Without even anything close to a full understanding of the implications, it was a very painful moment.”

Health insurance had been an ongoing issue for the couple, as some employers allowed them to share a policy and others didn’t. But insurance and other health-related matters suddenly took on added significance. Still reeling from the news, they had to prepare powers of attorney and other legal documents designed to circumvent the kinds of problems every unmarried couple fears.

They decided to sell their two-story condo and move to a single story, and they put the new place in Obergefell’s name alone to avoid any future probate problems. Obergefell’s employer has allowed him to work from home, but he has had no protection under the federal Family Medical Leave Act.

It’s unclear whether that will change now that they are married. No one knows what federal benefits couples would qualify for if they live in states that don’t recognize their marriages. Some benefits are granted based on where a couple lives, and others on where they were married. Leaving a state of residence that bans gay marriage to marry in one that allows it could further complicate things. The federal government is working now to untangle the confusion, but it could be years before it’s all sorted out.

Critics of allowing same-sex marriage argue that there are ways to extend legal protections to couples, to make sure they are never shut out of a partner’s hospital room or taxed extra because of their status, without changing the meaning that marriage has held for centuries. They want to create a “separate but equal” category for gay couples, a strategy that’s never succeeded in other questions of civil rights.

But in addition to rights, there is the question of recognition. To have one’s relationship viewed as equal to those of straight couples, to be able to check “married” on surveys and tax returns, is as important as the rights and protections that a valid marriage confers.

“In our minds we’ve always been married, but now I can actually say John’s my husband and have a piece of paper, and a Supreme Court ruling, and a federal government that says yes, he is your husband,” said Obergefell. “I’m overjoyed that we’ll now have a piece of paper that confirms what we’ve always known in our hearts – that we’re an old, married couple who still love each other.”

Next year Ohioans will likely have the chance to vote on whether to repeal the 2004 ban on gay marriage and allow same-sex couples to marry here. There are economic arguments in favor of repealing the ban, as many large companies prefer an environment in which all their employees enjoy the same rights. There is the argument that society benefits when it encourages loving, committed relationships and helps them flourish. And as Ohio combats brain drain, repealing the ban on same-sex marriage could help make the state more attractive to the many young adults who now leave for urban centers out of state.

But we believe this is the strongest argument of all: That couples who are already fulfilling the responsibilities of marriage, caring for each other in sickness and in health, should enjoy the privileges of marriage as well. They should be able to depend on the rights that many of us take for granted. They should be able to raise their children without having to carry adoption papers on a flash drive around their neck, and own property together without worry of what will happen to it upon death. They should be able to marry in the presence of family and friends, no matter where they live, and finally feel like full citizens no matter whom they love.

Complete Article HERE!

Posted on

I Am Breathing: film follows dying father’s last months

The film I Am Breathing documents the last year of a young architect’s life as he succumbs to motor neurone disease. His wife tells Sarfraz Manzoor why he chose to leave this moving legacy

By Sarfraz Manzoor
One evening in late October 2007 Neil Platt returned home after a busy day at work. Platt, 33, an architect, walked through the door of his London house and immediately sat down.

Neil with OscarWithout taking off his coat, he removed his shoes and socks to inspect his toes. There was something not quite right with his right foot. Neil told his wife, Louise, that he had been limping during the day but that, oddly, he was not in pain. The foot seemed to be ‘slapping itself’ on to the ground. Louise reassured him that it was probably nothing, suggesting he might just need new shoes.

But there was something else. Neil now noticed that he could not the lift the toes on his right foot as high as he could those on his left. He made an appointment to see his doctor. Louise was not unduly worried until Neil returned from the appointment: the doctor had given Neil his personal mobile number, insisted he undergo several tests and, because of Neil’s family history, referred him to a neurologist.

Neil had his suspicions about what was wrong; Louise was less convinced. But when Neil’s mother came to visit a few weeks later and saw her son limping towards her at King’s Cross station, she knew immediately what the matter was. The last time she had seen that limp was on her late husband.

Neil’s father, David, had died at the age of 50 from motor neurone disease (MND), which had also killed Neil’s grandfather at 62. His father’s death had made Neil acutely alert to the first symptoms of the disease. When he was 22 he had been to see a genetics specialist in an attempt to assess his chances of developing it. After six months of research the specialist came up blank.

He could only say there was a 50-50 chance that Neil was a carrier of the same defective gene as his father and grandfather, and even that was a guess. But on February 7 2008, after doctors had eliminated every other option (there is no specific test for MND), Neil was diagnosed with the disease.

MND is a brutal, merciless disease that rapidly causes physical deterioration, leaving sufferers unable to walk, swallow and eventually even breathe on their own. Someone with MND can typically expect to live about two years from diagnosis. It affects 5,000 people in the UK, with about 1,000 people diagnosed each year. More men than women are sufferers, and it is predominantly a disease of middle and later years (Neil was at the younger end of the spectrum). Although there is a genetic factor for some of those affected, the science is unclear on the causes. But while more than £300 million is spent annually on cancer research in the UK, the average annual spending on MND research is £2 million.

There is no treatment for MND, just management. So far only one drug, riluzole, has been developed for people with the disease. Riluzole can slow the rate of deterioration and extend life by, at best, about six months. One often hears stories of people battling and beating cancer, but no one beats motor neurone disease; once Neil was diagnosed, everyone knew how the story would play out.

For Neil and Louise the diagnosis seemed particularly cruel because they had recently become parents. The couple had met in 1994 as students at Edinburgh’s College of Art, but they had only begun a relationship a decade later when they ran into each other at a mutual friend’s party in London. They had been dating for a few months when Neil surprised Louise on holiday in Portugal by asking her to marry him. ‘We hadn’t been together for very long, but that was Neil – cheeky and confident,’ Louise said as we sat together in a cafe in Edinburgh. ‘The barman looked relieved when we got back to the hotel and Neil gave him a thumbs-up.’

They married in November 2004 in a Scottish stately home. In the wedding video Neil can be seen, in a bow tie, kilt and sideburns, dancing with Louise in the evening ceilidh. They moved to south London, and Louise became pregnant. Their son, Oscar, was born in August 2007. By the time of Oscar’s first Christmas, Neil and his doctors were fairly sure that he had MND.

‘My most vivid memory of that time is of when we went to my parents’ in Edinburgh,’ Louise told me. ‘I went for a walk at the beach with my mum and Oscar, and it was the first time I talked to Mum about there being a real possibility that Neil could die. I remember holding in the tears until I said, “How am I going to tell Oscar?”’

As the disease took hold, Louise found herself having to look after two dependent males. By Christmas 2007 Neil was supporting himself with a stick; by the next April he was in a wheelchair. There were times when the disease progressed with alarming speed.

‘There was a big jump in 2008, between Neil’s birthday in July and Oscar’s birthday in August,’ Louise said. ‘On Neil’s birthday I have photos of him wearing fingerless gloves, meaning he could push his own wheelchair, and by Oscar’s birthday he couldn’t lift his arms, needed a head rest and had lost a lot of weight. He was gulping like a fish.’
By September 2008 Neil could no longer use his arms at all, and Louise had to feed him. ‘The physical parallels [between Oscar and Neil] were unbelievable,’ Louise recalled. ‘I started having to spoon-feed Neil just as the spoon was being grabbed off me by Oscar. Oscar was pulling himself up just as Neil had to start using a hoist to pull himself up. And when the wheelchair arrived, so did the baby walker.’

It must have been hard to reconcile yourself to this turn of events, I suggested.

‘The fact I had a baby did me a huge favour,’ Louise, who had worked in film and television costuming before having Oscar, said, ‘because you go from being someone who is selfish in life to being a mother, to being a carer, and I was just doing all of that at the same time.’

But did you ever give in to self-pity or envy at those not in your position, I wondered.

Louise replied by telling me a story. The family had gone on holiday to Menorca with some of Neil’s relations. Oscar was ill with a tummy bug. One morning he woke early and Louise pulled him into bed, whereupon he had diarrhoea. ‘I remember putting Oscar into the bath to wash him,’ she recalled, ‘and I turned and Neil was standing in the doorway on crutches. Then suddenly he crumpled and was on the floor.’ That low point prompted Louise to change her outlook. ‘I switched my thinking from self-pity to thinking how privileged I was to be going through this so closely with Neil as he went on this part of his journey through life,’ she said.

Neil’s condition meant that Louise needed at least two other adults in the house at all times, three if possible. ‘I had to fill the calendar with whoever I could get – friends, family, they all worked as a tag team and gave up their time,’ Louise said. ‘We also had two palliative-care team members every week morning who came to wash and dress him.’ And then there were the other specialists who were in and out of the house: the GP, district nurse, palliative consultant, social worker, occupational therapist, speech therapist, dietitian, physiotherapist, MND nurse specialist, respiratory specialist, bloods nurse and night sitters.

The family moved to Harrogate so they could be close to Neil’s family, and Neil transferred to the Leeds branch of his architecture firm. To get to the office he would take a taxi to the station and then use a walking frame, but once he began to lose mobility in his hands, seven months after his diagnosis, he had to give up work. His brother Matthew, who is younger by five years and works for the police, took six months off to help. ‘I did all the shaving,’ Matthew said, ‘and breakfast was my job – as was the whole toilet thing. Neil was able to have a good existence because he had an army of friends to help out.’

‘Considering what we were going through, we had an amazing amount of good times,’ Louise said. ‘We saw our friends and family much more than we would normally have done, and Oscar was always surrounded by people.’

There were so many people who wanted regular updates about his condition that in July 2008 Neil alighted on the idea of starting a blog – he called it Plattitude – on which he could share his daily news. It would be, he wrote in his introduction, ‘a tale of fun and laughs with a smattering of upset and devastation’.

At the beginning the blog was Neil’s way of keeping in touch with those close to him, but as word spread and strangers began to read it, Neil realised that he could raise the profile of a misunderstood disease. The posts became much more frequent: from the end of December 2008, for the next two months, he posted almost every day, however much physical discomfort he was in and whatever his mood. If he couldn’t manage a post, he would ask Louise to write one for him.

At first Neil typed the blogs himself. When that became impossible, he would ask whoever was in the house to help him, and also began using voice-recognition software. In one entry he described his changing reaction to his condition. ‘Stage one was disbelief tinted with dread as I was given the diagnosis,’ he wrote. ‘Having been here before with Dad, it was never going to be pleasant. Stage two was to ignore it for as long as possible in order to enjoy every possible second with my beautiful wife and newborn son in our newly bought family home. Stage three arrived when it was no longer possible or realistic to ignore the symptoms.’

In summer 2008 Morag McKinnon, a drama director who had made a number of short films and who had known Neil and Louise since they were all students in Edinburgh, came across the blog. McKinnon contacted Emma Davie, a documentary-maker friend, suggesting they make a film about Neil. Neil immediately agreed to let the documentary makers spend several months filming him.

‘For me the film was so ethically complex that at first I didn’t want to make it,’ Davie said. ‘But when I met Neil the force of his desire to communicate demanded that we just get on with the job.’ The project crystallised when Davie and McKinnon decided to use words from Neil’s blog to narrate the film. ‘This empowered us,’ Davie said, ‘because it stopped the film from concentrating on his physical body and reminded us of the power of his mind.’

The resulting film, I Am Breathing, has already been screened in 14 countries, with many more international screenings to come on June 21 – MND Global Awareness Day. Fifty per cent of the profits will be donated to the MND Association, the other half invested in outreach work. The film is bleak, unflinching and moving, yet morbidly funny. In one scene Neil describes trying to arrange for his phone to be disconnected.

‘They want to know why I want to end my contract,’ he tells the camera. ‘They say, “We have some great deals,” and I say, “But I am dying, so I don’t need to use the phone,” and they say, “Would it make a difference if we threw in three months extra?” I told them, “If you can do that, you’re better than all my doctors put together.”’

‘They filmed everything they could,’ Louise said. ‘They interviewed Neil, they interviewed me and they made sure they got the general drudgery of running the house.’ We see Neil in his wheelchair, a ventilator tube obscuring his face while his son plays on the floor around him. We see him worrying about what questions Oscar will ask about his father in 10 and 20 years’ time, and we also see Neil constructing a memory box filled with objects to remind Oscar of his father as he grows up: a wallet, a leather jacket, a hat, a watch. It is clear that Oscar provides Neil with the strength to face the disease and keep going.

‘Neil lived with the disease because of Oscar,’ Matthew said. ‘He wanted to see his son become a little person. Me? I wouldn’t want to hang around. I could not watch my arms and foot stop working, I couldn’t put my mum and partner through it.’

As he deteriorated, Neil wished he could do more for his son and Louise. ‘I miss the ability to give (and receive to a certain extent) a hug,’ he wrote on his blog. ‘I think I used to be good at it too. All I can do now is raise my eyebrow or give a reassuring wink. Believe me that this does not have the same effect.’

Neil and Louise began to have conversations about the end and about life for Louise and Oscar without him. ‘Towards the end he sent me to Scotland, where my family are, to buy a house,’ Louise said. ‘He needed to know that I would have my own place. He was a father and he wanted the best for his child. He couldn’t say to me, “I want you to find someone else,” but he did say, “I know you will find someone else.” That was the only way he could do it.’

Time, they both knew, was running out. Louise had bought a clock that projected the time on to Neil’s bedroom ceiling; ‘I imagine it is my own personal countdown,’ Neil wrote. His line in the sand was speech: if he was no longer able to communicate, life would not be worth living. ‘As soon as my speech becomes unintelligible,’ he wrote in one blog post, ‘I will accept the offer of the hospice. This visit will be for the purposes of switching off the ventilator.’

On February 24 2009 Neil dictated his final blog post to Louise, a scene that is shown in I Am Breathing. In a dimly lit room Louise listens as Neil, his voice muffled, whispers, ‘The reason I have chosen to go to the hospice tomorrow is to draw the curtains over what has been a devastating, degrading year and a half.’ Quietly sobbing, she notes his words with one hand while tenderly stroking his hair with the other.

Christmas Day 2008
Neil Platt died the following day. He was cremated wearing a T-shirt emblazoned with the face of the action star Chuck Norris. The song he had requested to be played during the cremation was Bon Jovi’s Wanted Dead or Alive.

‘The most disappointing thing was that I had really hoped he would get to the point where he wanted to go – but he never got there,’ Louise told me. ‘He never wanted to die. He went kicking and screaming.’

Four years on from his death Louise has moved to Scotland. Oscar is now five, and while he does not remember Neil, he knows all about him. ‘He still gets a kiss from Daddy every night,’ Louise said. She is remarried, to Robin, a doctor. ‘The word “Daddy” is reserved for Neil, but Oscar calls Robin “Dad”,’ she said. ‘I could not deny him being able to call someone dad at that young age.’

Life, of course, goes on, and it’s clear that however unimaginably difficult things have been, Louise has not been broken. ‘I was determined not to be destroyed by this,’ she said. ‘And I learnt that from Neil.’

Oscar is too young to see the documentary about his father, but Louise hopes that many others will watch it – and that it inspires essential research into MND. ‘I am absolutely convinced that my remaining anger and disappointment will never dissipate,’ Neil wrote towards the end. ‘Nor would I want it to. Because the remaining jealousy and anger are now providing the fuel for the fire as we fight to find a cure for this bastard of a disease.’

Complete Article HERE!

Posted on

Threshold Choir

Be sure to check them out today!

Threshold Choir

Threshold Choir
is a network of
a cappella choirs of
primarily women’s voices:

a community
whose mission is
to sing for and with
those at the thresholds of life.

Posted on

ACLU says faith-based hospitals jeopardize reproductive, end-of-life care

By Aaron Corvin

Hospitals are supposed to be places of healing, but Washington’s hospitals are becoming places of conflict between religion and government over health care services.

faith-based hospitalsThe state’s American Civil Liberties Union is questioning whether health care regulatory agencies and public hospital districts should grant approval to faith-based hospitals — primarily Catholic — that don’t offer reproductive and end-of-life services that are widely available at secular hospitals. In some rural areas of the state, the ACLU says, hospital consolidations and mergers could leave communities only with Catholic hospitals which refuse, based on Catholic religious beliefs, to provide such services.

“We’re very troubled by what’s going on,” said Sarah Dunne, legal director for the Seattle-based American Civil Liberties Union of Washington Foundation. The ACLU is pressing its case on several fronts, including the possibility of legal action. The group also is challenging proposed partnerships between Vancouver-based PeaceHealth and other health care providers.

PeaceHealth, a Catholic-sponsored health system, is pushing back. The nonprofit health care giant — Clark County’s top private employer — says its partnerships with public hospital districts and others are well within legal parameters. And the organization stands by its right to deny certain services based on its religious principles, officials say, as it continues a long history of improving health care in a variety of communities.

“All we have to point to is our record of service,” said Jenny Ulum, a PeaceHealth spokeswoman.

Later this year, the proposal by PeaceHealth and Colorado-based Catholic Health Initiatives to join forces will undergo a public review and decision by state health regulators. The companies are submitting paperwork, and critics say they plan to weigh in.

The controversy arises amid dizzying political and economic changes in health care. Consolidation has become a health care industry norm. And federal health care reform has heightened tension between the Obama administration and Catholic-based health providers over insurance coverage for contraception.

Not all religiously affiliated hospitals operate in the same way or with the same policies. In PeaceHealth’s case, the nonprofit is a church ministry authorized by the archbishops of Portland and Seattle, according to Ulum. “The church’s authority pertains to our Catholic identity,” she said, “which basically has oversight over faith and morals.” However, PeaceHealth also is a nonprofit corporation with its own governing board and bylaws, Ulum said. PeaceHealth owns its property and facilities, she said, and is responsible for business operations and its health care work.
Legal arguments clash

The ACLU cites data showing that several merger proposals this year would decrease secular hospital beds in the state, in some cases handing a monopoly on health care services to religiously affiliated institutions.

As a result, the ACLU in Washington has launched efforts to curb what it sees as an alarming trend. That includes opposing arrangements between PeaceHealth and taxpayer-funded public hospital districts in San Juan and Skagit counties. The group argues the tax dollars should not be used to subsidize health services limited by PeaceHealth’s religious policies.

It’s also urging public hospital officials to renegotiate their relationships with PeaceHealth in light of the nonprofit’s proposed partnership with Catholic Health Initiatives.

The ACLU argues CHI is even more restrictive in its policies than PeaceHealth. Partly because of its larger size and influence, they say, CHI will likely seek to impose its religious doctrines in communities served by PeaceHealth.

But PeaceHealth officials say the nonprofit and CHI already have agreed that neither of their respective patient-care ethical policies will change under their proposed affiliation, which will be structured as an equal partnership. What’s more, they say, their partnership is intended to boost the quality of care they provide and to strengthen their financial footing to serve growing populations.

The situation in San Juan County exemplifies the conflict. Under an arrangement with the San Juan County Public Hospital District No. 1, PeaceHealth built Peace Island Medical Center, which opened last year. The new facility was built for $30 million, with the community covering about a third of the cost using private funds and with PeaceHealth footing the rest of the construction bill. And PeaceHealth runs the hospital under a contract with the district, which uses its property-tax levy to partially subsidize PeaceHealth’s operations.

Ulum, the PeaceHealth spokeswoman, said the hospital district transferred about $1.2 million in annual property-tax revenue it had used to operate its previous clinic to PeaceHealth. Nearly all of those property-tax dollars enable PeaceHealth to cover the costs of providing charity care and of maintaining a 24-hour emergency department, Ulum said. There was no change in the tax rate, she added.

Lenore Bayuk, the San Juan Hospital District’s commission chairwoman, said PeaceHealth’s entry into the community, with modern facilities, was crucial. Previously, the district struggled to cover its costs at the old clinic, Bayuk said. With PeaceHealth, she said, the district is on sounder financial footing. “We have a cancer treatment center which we didn’t have before,” Bayuk added, noting many other improvements.

But critics say the situation isn’t so tidy. Those include Monica Harrington, a former Seattle technology executive who opposes PeaceHealth’s contract with the San Juan County public hospital district. She cited the fact that San Juan County health officials have agreed to review concerns raised by some residents about health care cost and access issues, including at Peace Island Medical Center.

“We effectively traded lower-priced unrestricted health care in an increasingly dilapidated building for much, much higher-priced, religiously restricted care in a beautiful, art-filled facility,” Harrington wrote in an email to The Columbian.

The ACLU acknowledges the improvements made under PeaceHealth’s arrangement with the San Juan Hospital District. But the organization argues the contract between PeaceHealth and the district violates the Washington Constitution and the state’s Reproductive Privacy Act. “As a government entity, the hospital district should not subsidize religious facilities that discriminate against women’s fundamental rights,” Kathleen Taylor, executive director of the ACLU’s operation in Seattle, wrote in a letter to district officials.

PeaceHealth says the ACLU is wrong in its legal interpretation. There’s nothing in the law prohibiting public-private partnerships between hospital districts and private health care providers that maintain religious affiliations, the nonprofit says. The purpose of PeaceHealth is to provide “important health care services, not the advancement of religion,” according to its legal analysis. “To suggest otherwise is inconsistent with more than a century of collaboration in Washington between the state and religiously affiliated charities, health providers and others.”

But the ACLU says its concerns go beyond PeaceHealth’s arrangements with local public hospital districts.

In her letter to the San Juan County Hospital District, Taylor takes umbrage with PeaceHealth’s proposed partnership with CHI, which operates in 17 states and includes 78 hospitals. The venture between PeaceHealth and CHI would combine seven Catholic Health Initiatives hospitals in Washington and Oregon with nine PeaceHealth hospitals in Washington, Oregon and Alaska.

Although PeaceHealth has argued it will maintain its own ethical policies in its relationship with CHI, Taylor wrote in her letter, “the lack of any legally binding document to that effect fails to protect against the possibility” of additional restrictions on access to reproductive and end-of-life services.

In their concern about how PeaceHealth and CHI will interact, the ACLU and other critics also cite Kentucky Democratic Gov. Steve Beshear’s effort last year to block a proposed merger between University of Louisville Hospital and Catholic Health Initiatives. Beshear opposed the merger in part out of concern that the deal would reduce access to reproductive services. But after further negotiations, the deal went through this month and included a provision that U of L Hospital will remain independent of the Catholic health directives followed by CHI.

Closer to home, PeaceHealth says the concern about its potential relationship with CHI is a nonstarter.

In a letter to the San Juan County hospital district, Sister Andrea Nenzel, chair of PeaceHealth’s board, wrote: “(Catholic Health Initiatives) and PeaceHealth have already agreed that our hospitals, including Peace Island Medical Center, will not change their ethical policies regarding patient care that have been in effect for as long as 40 years.”
Diverging from mainstream?

PeaceHealth officials emphasize the nonprofit’s health care mission is spiritual and expansive, serving the poor and caring for those who are unable to pay for services. Its faith foundation means that PeaceHealth also carries a set of ethical policies that govern the medical services it chooses to provide. Those include:

• It does not permit abortion except to save the life of the mother.

• Contraceptive decisions, including tubal ligations and vasectomies, are between the patient and the provider, and are based on medical necessity.

• Emergency contraception is provided to women who are victims of sexual assault. However, PeaceHealth requires a negative pregnancy test before it will dispense emergency contraception.

• RU-486, which induces abortion, is not dispensed at PeaceHealth.

• With respect to end-of-life care, the nonprofit honors advance directives.

• Physician-assisted suicide is prohibited — even in states, including Washington, where it is legal — on PeaceHealth time and in the nonprofit’s facilities or any facility leased from PeaceHealth.

“In the vast majority of cases,” said Ulum, the PeaceHealth spokeswoman, there’s no “dogmatic policy that supersedes” the decision-making that goes on between a doctor and a patient.

Before Vancouver-based Southwest Washington Medical Center became part of PeaceHealth’s system in 2010, the hospital had been secular since the late 1960s, according to Ken Cole, a PeaceHealth spokesman. Still, the secular hospital honored its Catholic heritage, which dates to the hospital’s founding in 1858 by Mother Joseph of the Sacred Heart.

None of the ethical policies that Southwest, as a secular institution, followed in providing medical services changed when the hospital joined the Catholic-sponsored PeaceHealth network, according to Cole. “We were already in alignment with the system,” he said.

Of course, both organizations have made numerous other changes to solidify their affiliation, Cole said, including updating their clinical procedures.
‘Our conscience’

But critics see more gaps, “don’t ask, don’t tell” situations and slippery slopes in the policies of PeaceHealth and other religiously based health care companies than they do comprehensive services. And they cite examples in Puget Sound and across the nation where they believe that religiously based policies have interfered with patient rights and needs, and modern medicine.

“Who wants their doctor worrying about what a bishop thinks in the middle of a medical emergency?” said Harrington, the critic of PeaceHealth’s contract with the San Juan County public hospital district.

Harrington leads the Coalition for Health Care Transparency and Equity — the group arguing against the arrangement in San Juan County. She’s also co-chair of Washington Women for Choice.

Harrington has weighed in on issues of choice and access in a variety of ways, including submitting op-ed columns in the San Juan Islander newspaper. In one column, she wrote that she’s had “dozens of conversations with people who’ve had terrible experiences because of religious doctrine — from the doctor whose career was threatened as she worked to honor the wishes of a dying patient to a woman who found herself feeling abandoned and alone at Swedish (Medical Center in Seattle) with a midterm pregnancy that needed to end for her health and safety. Rarely do people feel comfortable speaking publicly.” Swedish entered into an affiliation with Providence Health & Services last year.

Harrington grew up in a Catholic family but said she has left the Catholic Church. The church’s view of health care “is diverging from mainstream health care,” she said, “and the people who are most at risk are reproductive-age women and people at the end of life.”

When asked whether the ACLU was girding for a lawsuit, Dunne said the group is exploring all of its options. For now, it continues to research the issue, including asking patients and medical providers to take a confidential survey intended to pinpoint cases in which health services have been denied on religious grounds.

For its part, PeaceHealth says it’s focused on its mission to expand services and deliver improved care to the populations it serves. “I don’t think there’s a lot of disagreement over the positive contribution (the) hospital is making,” said Ulum, the PeaceHealth spokeswoman. And PeaceHealth’s policies against providing certain services, Ulum said, are based on “our conscience as an organization.”

Complete Article HERE!

Posted on

Patients, doctors, and the power of religious faith

By Dr. Suzanne Koven

In the lobby of the hospital where I did my medical training stands a 10½-foot marble statue of Jesus. Patients and visitors often pause before the imposing figure to gather their thoughts, pray, or just touch its smooth white foot. The hospital has always been secular, but the statue has brought comfort to thousands for over a hundred years. It also reminds doctors that, in medical matters, our patients do not necessarily see us as the final authority.

praying_handsSeveral surveys show that over 90 percent of Americans believe in God. It’s not surprising, then, that religion plays an important role in medical care. Just as there are no atheists in foxholes, a nonbeliever might reconsider while being rolled into the operating room or waiting for a biopsy result.

The clinical efficacy of prayer is difficult to measure, though researchers have tried. In one study, strangers were instructed to pray for patients undergoing heart surgery. The prayers did not seem to improve the patients’ outcomes. Interestingly, if the patients were told they were being prayed for, they had more postoperative complications.

Still, there’s no question that prayer benefits many people. Prayer, like meditation, can lower blood pressure and anxiety and put patients in a more positive frame of mind. Even doctors like me who are not religious appreciate the element of mystery in medicine; an unexplainable force that seems, at times, to aid recovery. I was discussing this recently with a patient of mine who is a nun. She pointed out that what I call a coincidence she calls a GOD-incidence — even though we might be talking about the same thing.

On many occasions I have found myself humbled and inspired by my patients’ religious faith, even when I did not share it and even when it did not produce a cure.

One devout woman in her 50s who was dying of uterine cancer made an appointment with me to discuss what she had only identified on the phone as “plans.” I assumed she meant hospice care, DNR orders, and pain management. But what she had in mind was none of these. She told me, matter-of-factly, that she had no fear of death, that she fully expected to be reunited in heaven with her late father, and that she looked forward to this.

She did, however, have some loose ends to tie up before then, including arranging for the care of her mother, an elderly woman who was also my patient. In a very organized and business-like way she told me that she intended to move her mother in with a cousin, and enlisted my help in transferring her medical care to a physician closer to her new home — or, her next-to-last home, the one she’d inhabit before she too arrived in heaven.

I found myself full of admiration for this woman, and envious of her, too. I could not imagine having this kind of equanimity myself, faced with a hereafter about which I did not share her certainty. I had to admit that God offered her more beneficial “end-of-life counseling” than I ever could.

Another time, I found myself in a diagnostic dispute with God. A middle-aged woman developed a series of neurological symptoms. Neither I nor several specialists could determine their cause. The patient, on the other hand, was quite sure that she had chronic Lyme disease. She’d had a divine vision one night, in which the word LYME appeared in large letters. For a few years she took antibiotics continuously, prescribed by a doctor who treats chronic Lyme.

Unfortunately, her symptoms progressed, and she ultimately proved to have ALS, or Lou Gehrig’s Disease. After the woman died, I reflected that while her vision had been misleading, it had brought her hope during the last years of her life — hope that she would not have enjoyed if she’d known from the start that she had ALS.

Occasionally, even I wonder if an event can be purely coincidence.

Years ago, I headed out of town on vacation, neglecting to tell a hospitalized patient of mine that I would not see her for several days. I had arranged for one of my partners to care for her, of course, but worried about whether she would feel I’d abandoned her. This was before the era of cellphones, and the pay phone at the seaside motel where I was staying was broken. I decided that it really wasn’t necessary to call my patient and went for a walk on the beach.

By the water, coming toward me, emerging through the bright sunlight, was a man wearing a T-shirt with a single word imprinted on it: my patient’s last name. I left the beach and found another pay phone. She was doing fine, and was happy to hear from me.

My patient the nun once asked if I might visit her mother, also my patient, at home when the older woman was near the end of her life. She asked if I would draw her mother’s blood during my house call.

I was a crackerjack phlebotomist back when I was an intern, but it had been years since I’d drawn blood and told her I might be rusty. That was OK, she said. She had faith in me.

I dusted off my black doctor’s bag, threw in a needle, some tubes, alcohol wipes and a tourniquet, and headed to my patient’s house. When the time came to draw the woman’s blood, I had trouble finding a vein.

“You can stick her again if you need to,” said the daughter kindly. I confessed that I’d brought only one needle.

“Then, doctor,” said the nun, “I will pray for you.”

I adjusted the needle slightly, and a flash of red appeared. I turned to the patient’s daughter, seeking her approval. But her eyes were not on me.

They were lifted to the sky.

Complete Article HERE!

Posted on

Is Death The Enemy?

“In the end, the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.”

 

For many healing and helping professionals, death is the enemy. That doesn’t come as much of a surprise really. Everything in our training, as well as everything in our culture, underscores that mindset. But this principle can actually be counterproductive more often than we realize. I am of the mind that if we encounter our mortality in an upfront way, we will be able to demonstrate genuine compassion to our patients and clients as they face theirs.hospitalbed

Here are some things we might want to consider if encountering mortality is our goal:

  • Death isn’t only a universal biological fact of life, it’s also a necessary part of being human. Everything that we value about life and living — its novelties, challenges, opportunities for development — would be impossible without death as the defining boundary of our lives.
  • While it may be easier to accept death in the abstract, it’s often more difficult to accept the specifics of our own death. Why must I die like this, with this disfigurement, this pain? Why must I die so young? Why must I die before completing my life’s work or before providing adequately for the ones I love?
  • Living a good death begins the moment we accept our mortality as part of who we are. We’ve had to integrate other aspects of ourselves into our daily lives – our gender, racial background, and cultural heritage, to name a few. Why not our mortality? Putting death in its proper perspective will help us appreciate life in a new way. Facing our mortality allows us to achieve a greater sense of balance and purpose in our life as well.
  • Dying can be a time of extraordinary alertness, concentration, and emotional intensity. It’s possible to use the natural intensity and emotion of this final season of life to make it the culminating stage of our personal growth. Imagine if we could help our sick, elder, and dying clients and patients tap into this intensity. Imagine if we had this kind of confidence about our own mortality.

We healing and helping professionals can actually help pioneer new standards of a good death that our patients and clients can emulate. We are in a unique position to help the rest of society desensitize death and dying. And most importantly, we would be able to support our patients and clients, as well as those they love, as they prepare for death. We could even join them as they begin their anticipatory grieving process.EndOfLifeCareSOS024HIRESsmall

If we face our mortality head-on we will understand how difficult it is for our sick, elder, and dying patients and clients. We will be more sensitive to their striving to regain lost dignity by actively involving themselves in the practical preparations for their own death. If we can project ourselves to the end of our lives we will better understand our patients and clients as they try to negotiate pain management, choose the appropriate care for the final stages of their dying, put their affairs in order, prepare rituals of transition, as well as learn how to say goodbye and impart blessings.

Facing our mortality may even allow us to help our patients and clients learn to heed the promptings of their mind and body, allowing you to move from a struggle against dying to one of acceptance and acquiescence.

In the end, the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.