Palliative care for the living — more education is needed

A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.

But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.

Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.

One reason for this is that many people inaccurately think of palliative care as only care for the dying.

The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.

Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.

People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.

Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.

Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.

To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.

But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”

Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.

Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.

While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”

Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.

Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.

To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.

Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.

Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.

The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.

Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.

Complete Article HERE!

Meet the ‘end-of-life doulas’ guiding people to their death

By Emily Ford

Lizzie Neville is an ‘end-of-life doula’ who helps people prepare for death.

Doula is a term traditionally associated with childbirth, describing someone who helps a woman before, during or after childbirth.

But ‘death doula’ Lizzie, from Alton, Hampshire, was hired by Lowri Rylance, from Basingstoke, when her husband was diagnosed with terminal brain cancer.

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

Grief Massage Therapy Sessions Help Clients Cope

Grief might live in the heart, but it affects the body, too, contributing to pain and tightness.

By

Massage therapists Leslie Freeman and Annie Murphy created Bereavement Massage Therapy to help clients who were going through the grieving process.

“As we thought about ourselves and our past clients who had suffered losses, and shared their experiences with us, we remembered the stiffness of muscles, holding patterns in joints, their feelings of being at loose ends, a lack of grounding and vitality,” Freeman explained.

Freeman practices the technique at her Sarasota, Florida, office.

 

This type of session is part of a growing trend that recognizes massage therapy as an effective means of addressing stress and sadness, and helping clients find peace on the other side of the session.

Massage Consoles

Research reported in Science Daily found that receiving massage therapy for eight weeks after a loved one’s death helped them cope.

“Eighteen people, aged from 34-78, who had lost a relative to cancer took part in the study. They all said the massages provided consolation, helping them to balance the need to grieve and the need to adapt to life after the loss of their relative,” the article noted.

According to Freeman, Bereavement Massage Therapy is a distinct method that combines various modalities to address grief, and is not to be confused with end-of-life massage therapy.

Where the intent of end-of-life massage is to ease the transition of the dying from one realm to another, Bereavement Massage Therapy focuses on reconnecting the grieving client to their body.

To do this, the technique uses flat-hand vibration, gentle rocking and comfort holds to loosen and calm disconnected areas. Bereavement Massage Therapy also incorporates such techniques as reflexology, polarity, Swedish massage and craniosacral techniques.

“When a loved one dies, it’s like you crash and you have all these pieces,” said client Mirta LeCuona. “You don’t have an integrated body. With [Bereavement Massage Therapy], it’s like you start to put your body together. It’s like a wave around you that puts you back together.”

Freeman stresses that Bereavement Massage Therapy does not eliminate the grieving process or fix all pain issues. “Grief is a journey that each person has to take in their own time,” she explained.

Nor is it intended to fix pain issues, although pain relief can be a side effect as the client’s muscles relax.

Instead, Bereavement Massage Therapy is used to give the client a sense of balance during a time of upheaval. People who have received sessions report a sense of feeling lighter as a result.

“Afterward, I felt very calm and at ease, as if a weight had been lifted off of me,” said client Deb Fillion.

Before the session, the intake is key. “Our intake form is a little bit different than the average intake form that asks clients about injuries or illnesses or medications taken and that sort of thing,” said Freeman.

“We ask about appetite, sleep patterns, anything that the client wishes to tell us. We want to get an idea of what’s going on with them during the illness or loss and afterward.”

Putting the Pieces Back Together

It was while working with hospice patients that Freeman, who has a background as a certified nursing assistant, felt inspired to create Bereavement Massage Therapy.

She found the experience of working with the terminally ill extremely rewarding, but acknowledged that her deep inner reservoir of empathy presented an obstacle for that type of work. With 17 years of massage experience, and the hunch that her empathic energy was leading her elsewhere, she decided to meditate on a path forward. As she sifted through her memories of loss and its physical effects, she received a message.

“I clearly heard these words, ‘Work with those who are left behind. You were,’” she recalled. “And I had this vision of putting humpty dumpty back together again.”

With this vision in mind, Freeman sought out a collaborator. She approached Murphy, telling her, “‘I want to tell you about this idea I have and I’m looking for someone to help me put it together. So take your time thinking about it.’ And she took about three minutes and said ‘I’ll take this journey with you.’”

Consistency

Bereavement Massage Therapy uses a combination of established massage modalities—reflexology, hand-and-foot massage, Trager work, craniosacral techniques, polarity and more—to create groundedness, lightness of being and balance.

Using the same sequence of these modalities for each of the three sessions is a key component of Bereavement Massage Therapy.

“Usually, with massage therapy, pretty much every session is different,” Freeman said. “One time it might be to fix a shoulder, the next time it might be to just de-stress.

“Doing something in the same sequence, in the same way, was very different for me, but it gives a comfort zone for the person who’s already torn apart emotionally. They know what to expect and they find solace in routine,” she added.

Freeman also takes the client’s breathing into account.

“It’s easy to hold your breath for a long period of time when you’re anxious, or to breathe too fast,” Freeman said. “So we work the lung areas [via reflexology] on the feet and the hands, and the heart areas too, to bring those areas back into balance.”

Communication without Counseling

By venturing to help clients in such a tender emotional state, there is a danger of crossing the boundary between massage therapy and talk therapy. Freeman clarified that Bereavement Massage Therapy is not counseling.

“There is very little talking by the therapist in a Bereavement Massage Therapy session. It’s only to ensure that the client is comfortable,” she said.

Clients are always welcome to speak during a session, but clients who expect counseling should contact their care providers, such as hospice, a family physician, clergy, funeral director, or veterinarian, in the case of pet loss; or to find licensed mental health care providers or local support groups.

Freeman keeps business cards on hand to easily refer clients to mental health professionals.

Touch for the Spirit

LeCuona had just taken possession of her late husband’s ashes and was about to go into a Bereavement Massage Session.

“I thought to myself, ‘Where do I put [the] ashes?’ This was the first time I was in custody of him, leaving the car. I called Leslie and I said ‘Leslie, I have a problem.’ I asked, ‘If you don’t mind, can I take the ashes of my husband into the room?’

“She said ‘Of course.’ That means it was not only me, it was my husband. Leslie allowed me to do this. It was very important.”

LeCuona sums the experience up nicely. “[Bereavement Massage Therapy] is very emotional. You have to be very centered to do this. This type of massage is not for your body. It’s for your spirit … for me, I felt I was saved. It was my shelter.”

Freeman said nurturing touch is up there with life’s necessities.

“People have needs,” she said. “We need water, oxygen, food. And we need human touch.”

Complete Article HERE!

How These Med Schools Are Improving End-of-Life Instruction

It’s a shift toward care based on who the patient is and what he or she wants

By Bruce Johansen

While all medical students must witness a birth, being present for someone who’s dying is not a requirement. Dying has traditionally received little attention in medical school curricula. Interviewed by The Boston Herald earlier this year, Dr. Atul Gawande, surgeon, founder of the Massachusetts Coalition for Serious Illness Care and author of Being Mortal (also a Next Avenue Influencer in Aging) said his end-of-life training amounted to one hour of discussion during his first two years in medical school. He’s now part of an innovative effort to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.

What Matters Most at End-of-Life

“We’ve been wrong about what our job is in medicine,” Gawande writes in Being Mortal. “We think our job is to ensure health and survival, but really it is larger than that. It is to enable well-being.” Gawande emphasizes training students to discern what gives a person’s life meaning and then choosing a course of treatment based on what that information involves. It’s a shift away from a “fix-it” mentality, which focuses on prolonging life.

Gawande credits the transformation in his thinking to observing palliative care clinicians and geriatricians. On an episode of PBS’ FRONTLINE, Gawande explained that seeing his colleagues’ conversations with their patients taught him what he could do better for his own.

One of those colleagues, Dr. Jennifer Reidy, is chief of palliative care at UMass Memorial Medical Center in Worcester, Mass. and a University of Massachusetts Medical School professor. “What’s great about palliative care is that you can incorporate it into your practice no matter what specialty you are,” Reidy says.

Holding conversations about what matters most and “being able to treat people’s pain and other distressing symptoms that affect their quality of life are all things that any doctor should be able to do in their field,” she says. Reidy foresees eventual changes in training extended to entire care teams: nurses, nurse practitioners, social workers, chaplains and pharmacists.

Reidy was one of the first students to do a palliative care rotation during her training at University of Vermont’s Larner College of Medicine in the late 1990s. There she learned that the care plan should be driven by who the person is, not by the available technology or what was possible.

If a person is diagnosed with an incurable disease, she says, the essential question comes down to: How do you make the most meaningful use of whatever time remains?

According to Reidy, this often means “focusing on being with the people who they love, and being more in their ‘real lives,’” rather than in the hospital. Given the option to forego harsh, life-prolonging therapy, many take care of things left undone such as making amends or getting financial affairs in order.

“It’s so unique to whatever is meaningful for that person,” Reidy says.

Fired Up Students

While details of the curricula will look different, Reidy says students at each participating school will be taught complex communication procedures for breaking difficult news and having conversations about prognoses and end-of-life planning.

When it comes to communication, “no one gets a pass anymore,” says Reidy. What’s exciting to her is that students are fired up about these developments. “It really taps into their sense of meaning and purpose, and why they came into medicine in the first place,” she says.

Students are learning how to share information in chunks and in clear language, then to pause, listen, allow questions, allow silence, allow emotion and sit with someone’s sadness or anger.

“Then they’ll be able to figure out amidst all of this, what’s most important, what should we be focusing on,” Reidy says.

To ascertain what will bring well-being, Gawande promotes students learning to ask:

• What is your understanding of your illness?
• What are your fears and worries for the future?
• What are your priorities if time becomes short?
• What are you willing to sacrifice and what are you not willing to sacrifice?
• What does a good day look like?

Instead of prompting a conversation about death or dying, these questions get to the crux of: How do you live a good life all the way to the very end, with whatever comes?

Building Momentum

Tiffany Chen, a fourth-year University of Massachusetts Medical School student, is a “champion” of the project, says Reidy. Growing up in a multigenerational home with parents and grandparents, Chen was first exposed to palliative care during her senior year of college when her grandfather was diagnosed with Lewy body dementia at the end of his life. Two years later, when her grandmother was diagnosed with bladder cancer, Reidy was assigned to be her palliative care doctor. Chen credits Reidy’s care with changing her grandmother’s course of treatment and the “quality of her death.”

Combined with a love of helping people, that experience inspired Chen to pursue a medical career. She hopes to go into family medicine and eventually have a fellowship that’s integrated in geriatrics and palliative care.

Chen has taken leadership at her school, including being part of organizing a focus group of students interested in giving palliative care “more of a voice.” The new curriculum, she says, promises to make students “better equipped at baseline to have these conversations.” They’ll become more adept at reading people’s cues and better communicators overall, “by first listening,” she says.

“The biggest thing is actually practicing with someone who’s experienced observing, and then giving you feedback,” Chen says. At her school, a simulation lab and new training methods, including role-playing patient actors, are key.

Reidy feels hopeful that the consortium is part of a larger movement, noting that medical schools at the University of Rochester and Yale University have stepped up as leaders.

Massachusetts offers a new model — the first time each of a state’s medical schools have joined forces. It’s this collaborative element that is having an impact on her school’s administration, says Chen. “Prior to this, you’d talk about palliative care being very important and needing to be in the curriculum, but that’s true of a lot of things.” The partnership has created momentum.

Complete Article HERE!

For terminally ill cancer patients, where you live can shape end-of-life care

By

If you are a terminally ill cancer patient, where you live can determine how much it will cost for you to die.

The last month of life for a Medicare patient diagnosed with advanced-stage lung or colorectal cancer cost an average of $13,663, according to a study published today in the journal Health Affairs. But that cost can also vary widely, the study suggested, from $10,131 per patient in the lowest 20 percent of hospital referral regions included in this study to $19,318 in the highest 20 percent.

What drives those price differences? A physician’s medical philosophy and practice styles propelled higher medical bills, and patients in geographic areas with fewer primary doctors and hospices per capita also tended to have higher end-of-life costs, the study said.

Researchers reached this conclusion after surveying physicians on what they believed, how those beliefs played out in practice and how skilled they were in delivering end-of-life care, along with patient and claims data.

These findings underscored how important end-of-life decisions are, even when a patient may be days away from death,said Nancy Keating, a health care policy professor at Harvard Medical School and physician who led a team of researchers for this study. For instance: Does it make sense to give a stage-IV lung cancer patient with virtually no prospects of recovery a fourth round of chemotherapy? Or would it be better to talk about entering hospice care?

“We need to do a better job of helping train physicians to feel more comfortable and be more comfortable talking about end-of-life care with patients,” Keating said.

Nearly 40 percent of the 3,139 doctors in the study said they strongly agreed that they were “well prepared” to offer end-of-life care. Roughly as many — 43 percent — said they would recommend chemotherapy to a patient with late-stage lung cancer, despite concerns about that patient’s ability to recover or the pain they might endure. Yet two-thirds of physicians said they would prefer hospice if they were terminally ill.

For patients, 12 percent of those surveyed said they believed “cancer can be cured” and as many patients said cancer treatment can result in “serious side effects,” according to Keating’s data analysis. More than a third of patients said they wanted treatment that could help them live longer “even if it causes more pain” and 43 percent of patients said they preferred such treatment even if it drained their finances.

This study joins a growing body of research on lowering health spending and the role of palliative and end-of-life care in improving the final days of a patient’s life, said Otis Brawley, who serves as chief medical officer for the American Cancer Society and did not contribute to this study.

“The growth of palliative and hospice care in the U.S. is really important for improving quality of care,” Brawley said.

For years, Keating has pored through Medicare and Medicaid oncology data to figure out how to better spend money. In this latest effort, she analyzed claims data for 1,132 Medicare patients age 65 or older who had been diagnosed with late-stage lung or colorectal cancer between 2003 and 2005. Her team then tracked those patients until 2012 using the Cancer Care Outcomes Research and Surveillance Consortium study that draws on registries of cancer patients.

She linked patient information from these two datasets to overcome what she sees as a weakness in many studies about health care costs — researchers often only see a snapshot of a living patient. This study tracked them throughout multiple points in time. That said, Keating concedes that a limitation of this study is that many patients died by the late 2000s , narrowing the pool of people who could be studied beyond that point. Most patients — 65 percent — died by 2005, within the first three years of the study period.

In this study, researchers scanned 26 hospital referral regions — from McAllen, Texas, to Manhattan, New York — of the 306 regions nationwide. Patients were assigned to these regions based on the ZIP code where they lived at the time they were diagnosed with cancer.

“In a perfect world, we would have gotten national data,” Keating said, but capturing responses from newly diagnosed cancer patients about their care preferences “would have been impossible.”

There are some “very human reasons” that may account for disparities in price and treatment preferences, Brawley said in an email to the PBS NewsHour. Sometimes, primary care physicians develop long-standing relationships with the families they serve, he said, and specialty physicians also forge bonds with families when a patient endures the trauma of receiving treatment for a life-threatening illness. This might make a physician more apt to suggestion additional interventions, despite negative side effects.

“Some would criticize them for believing too much in the medicine they practice,” Brawley said, “but my experience is it’s more complicated than that.”

The calculus of treating patients with advanced-stage cancer is difficult, said Laurence Heifetz, medical director at Gene Upshaw Memorial Tahoe Forest Cancer Center in Truckee, California, a rural cancer care practice he has built north of Lake Tahoe over the last 12 years.

A patient’s expectations don’t always align with what the best treatment might be or with what resources are currently available, said Heifetz, who also spent two decades treating cancer patients at 1,000-bed Cedars-Sinai Medical Center in Los Angeles.

When considering palliative care, it’s hard for doctors to know who has six months left to live — the threshold for offering end-of-life services, Heifetz said. And a treatment that works for one patient may not for the next, even if they have the same type of cancer, he said: “We don’t know who will respond, and then we’re blamed after the fact for giving an unnecessary drug to someone who dies.”

But Heifetz thinks he knows one way to bring down cost while delivering high-quality care: “An earlier, more honest conversation with patients will allow for more realistic acceptance of the sentence, ‘I guess it’s time to quit.’”

Complete Article HERE!

I Know You Love Me — Now Let Me Die

A physician laments the often-excessive care of older adults at the end of life

By Louis M. Profeta, M.D.

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then.

Still the Same Person

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

‘Enriched and Happy’

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”

Adding Time but Not Life

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

‘We Stopped Seeing Her’

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

A Slow, But Enormous Change

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.

Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.

‘What in the Hell Were You Thinking?’

We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Complete Article HERE!