Is turning off a pacemaker ever the right thing to do? When a life-saving heart implant becomes a painful burden

  • After almost 20 years of living with a pacemaker, Nina made a decision
  • Ms Adamowicz, 71, no longer wanted the device that was keeping her alive
  • After some consideration doctors agreed, and the woman died peacefully
  • Thought to be the first case in the UK, their choice has sparked controversy

By Rachel Ellis

[A]fter almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive.

It had been implanted in 1996, and for the first decade it ‘improved’ her life and symptoms — she had a form of hereditary heart disease.

The pacemaker sent regular electrical pulses to keep her heart beating steadily, and she was grateful for ‘being given extra time’, she later recalled.

However, she then had a heart attack and her health declined so that by 2014, her heart was working at just 10 per cent of its capacity.

Last year, Polish-born Ms Adamowicz, 71, who had lived in the UK for more than 30 years, revealed she wanted the pacemaker turned off, even though she knew it would lead to her death.

After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive
After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive

It was like being ‘in line for execution and being told “not yet”, she said in an interview for BBC Radio 4.

‘It’s not about “I want to die”, I’m dying,’ she added.

After a series of medical examinations and psychological tests to determine whether she understood what switching off her pacemaker would mean, doctors agreed, and last October Ms Adamowicz went into a local hospice with her family for the pacemaker to be turned off – a procedure that took 20 minutes.

She described her body as feeling heavy and she felt a little nauseated – but she also felt at peace, her family told the BBC.

She slept through the night, returned home in the morning and died that night.

Her case – thought to be the first of its kind in the UK – raises profound ethical issues about when it is right to turn off someone’s pacemaker, or indeed withdraw other medical treatment such as dialysis for kidney failure, if that’s what they want.

In fact the law itself is very clear on this point, according to Miriam Johnson, professor of palliative medicine at Hull York Medical School.

‘A mentally competent adult has the right to refuse medical treatment, whether it is turning off a pacemaker or stopping dialysis, even if that treatment is prolonging their life and withdrawing it will lead to their death,’ she says.

‘By turning off the device, the disease or illness will kill the person, not the doctor.’

However, some doctors feel it’s uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature.

Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature
Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature

‘The difficulty with a case like this is that when a patient is dependent on a pacemaker, there is a direct connection between withdrawing the treatment and them dying within the next few hours,’ adds Professor Johnson, explaining that doctors’ role after all is to protect the vulnerable.

Around 35,000 patients in the UK have a pacemaker fitted each year. The device’s role is to keep the heart beating steadily – it gives it a boost by delivering electrical impulses so that the heart contracts and produces a heartbeat.

The computerised match-box sized device is implanted just under the skin, usually just below the left shoulder and electrical leads are then fed down a vein into the heart.

‘In a significant number of pacemaker cases if you suddenly took the pacemaker away, the heart would stop beating,’ explains Dr Adam Fitzpatrick, a consultant cardiologist and electrophysiologist at Manchester Royal Infirmary and Alexandra Hospital, Cheadle.

He adds: ‘It is very unusual for a patient to ask for their pacemaker to be turned off.’

Even if the patient is dying, a pacemaker does not need to be switched off, says the British Heart Foundation.

'A pacemaker's purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation
‘A pacemaker’s purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation

‘Its purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson.

But the picture is slightly different with other heart devices such as Implantable cardioverter defibrillators (ICDs) which are used to correct an abnormal heart rhythm rather than helping the heart beat steadily.

These devices, implanted in around 9,000 people in the UK every year, kick in when an abnormal heart rhythm occurs which can cause sudden cardiac arrest (where the heart stops beating).

Implanted under the collarbone as a pacemaker is, they work by firing a small electric shock into the heart to kick-start it (some pacemakers have this function too).

This might happen once every few months or not even for years.

However, this can be both painful and traumatic, especially at the end of life, and can lead to a prolonged and distressing death by continuing to give electric shocks.

In one particularly upsetting case reported in a US medical journal, a man suffered 33 shocks as he lay dying in his wife’s arms — the ICD ‘got so hot that it burned through his skin’, his wife later reported.

Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current
Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current

‘Dying patients often have multi-organ failure which can cause metabolic and chemical changes that may trigger arrhythmias, faulty heart beats and in turn activate the ICD,’ explains Dr James Beattie, a consultant cardiologist at the Heart of England NHS Foundation Trust, Birmingham.

‘If the device goes off when the patient is conscious, the shock is like a blow to the chest, causing discomfort and distress. It may also fire repeatedly.

‘This may result in a distressing death for the patient and distress for the families.’

Yet despite this suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research published in the Annals of Internal Medicine.

Furthermore, a 2011 survey by the National Council for Palliative Care suggested that only 40 per cent of UK hospices have access to the technology to deactivate the device urgently, potentially risking an undignified and painful death in hundreds of patients should they suddenly deteriorate.

Switching off the device involves holding a magnet over it, temporarily closing a magnetic switch incorporated in it.

To turn it off permanently the device has to then be reprogrammed remotely using a ‘wand’ attached to a computer.

Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research
Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research

Medical professionals and families face a number of dilemmas when deciding whether to turn off an ICD.

One is the difficulty in accurately predicting when the patient is reaching the end of their life.

‘Determining this isn’t always clear, especially with a condition such as heart failure when patients may have survived crises over many years,’ explains Professor Johnson.

‘This can be complicated further if the patient is suffering from dementia and unable to make decisions about their care.’

There is also an understandable reluctance by patients and their families to take away anything that can prolong life.

‘Patients and their families frequently think of the device as entirely beneficial,’ says Professor Johnson.

‘There is also often unrealistic expectation about what doctors are able to do to keep people alive.’

Many doctors shy away from these conversations, too. A 2008 report from the National Audit Office found a significant lack of confidence in handling end-of-life care across all medical specialities — with cardiologists topping the league.

‘Given they are trained to save lives, talking about death can be seen as professional defeat,’ says Dr Beattie.

But if patients and doctors don’t have that conversation ‘we’re storing up trouble because decisions then have to be made at times of crisis and without planning’, says Simon Chapman, of the National Council for Palliative Care.

New guidance for patients and medical staff to guide them through the ethical minefield of withdrawing heart devices was published earlier this year in the journal Heart.

Just how difficult making such decision can be was dramatically highlighted in the case of Fred Emery.

When his health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months.

When Fred Emery's health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months
When Fred Emery’s health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months

The 73-year-old former manual worker from Kings Langley, Hertfordshire, had had the matchbox-sized device implanted in his chest following a 26-year battle with heart disease.

During that time he’d had two heart attacks, and had already undergone two triple heart bypass operations as well as having several stents (tiny metal tubes) inserted to prevent his arteries blocking.

However, Fred then developed heart failure and ventricular tachycardia — a potentially fatal heart rhythm

Having a defibrillator not only helped with the heart failure, but also any sudden cardiac arrest triggered by the faulty heart rhythm.

But Fred’s condition deteriorated and doctors suggested that as he was nearing the end of his life, it was time to turn off this life-line — to spare him and his family the ordeal of it repeatedly jolting his heart back to life when his body had reached the natural moment of death.

However, despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year. His family was angry that doctors had written him off before his time.

Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year
Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year

‘It was awful when they told him to turn it off,’ his wife Shirley, 70, told Good Health. ‘Fred was taken ill at 4pm, and by the next morning the defibrillator was turned off. It was too soon to make that decision — he wasn’t himself and was under pressure to switch it off.

‘After it was reactivated, Fred had six more years. Without the ICD we would have lost him several years ago.

‘He kept it on until a week before his death. By then his heart was working at 15 per cent, he was in a hospice and there was no coming back so we made a decision to turn it off to give him some dignity at the end. He knew what was happening.

The uplifting truth about end-of-life care

By Brandpoint

Preparing for end-of-life

When a loved one is critically ill, hearing that it’s time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is — and believe it’s just an indication your loved one will likely pass away.

Yet the time your loved one spends in hospice care doesn’t have to be sad — for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.

“Hospice care is not about waiting for someone to die, and that’s unfortunately a very common misconception,” Norman says. “The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits.”

The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. “A terminal diagnosis from a doctor usually begins the process of seeking hospice care,” Norman says. “Also, as a family member’s health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate.”

Brookdale Senior Living’s hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:

* Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course. “Most people who enter hospice have done so because they’ve received a diagnosis of a life-limiting illness,” Norman says. “But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves.”

* Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. “It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible,” Norman says.

* Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient’s pain and symptoms are uniquely managed.

* Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.

* Hospice care ends when a patient dies. Because hospice cares for the patient’s caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.

“The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers,” Norman says.

Hospice ideally occurs in a patient’s home, whether that’s a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.

“End-of-life care isn’t just about taking pain medications to relieve symptoms until death,” Norman says. “It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible.”

Complete Article HERE!

How doctors are failing us in death

Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life

By

Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. "The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions," writes Mohamed Dhanani. "This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud."
Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”

I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.

It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.

Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”

He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.

Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.

The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.

Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.

Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.

On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.

In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.

Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.

Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.

As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.

Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.

Complete Article HERE!

Early Palliative Care Improves Patients’ Quality of Life

Also increases chances of having end-of-life discussions, study shows

By Robert Preidt

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.

Starting palliative care shortly after a person is diagnosed with incurable cancer helps patients cope and improves their quality of life, a new study shows.

It also leads to more discussions about patients’ end-of-life care preferences, the researchers added.

Palliative care, also called comfort care, is given to improve the quality of life for patients who have a life-threatening disease or terminal illness, such as cancer. The goal is not to cure the patient, but to manage the symptoms of the disease, according to the U.S. National Cancer Institute.

The new study included 350 people recently diagnosed with incurable lung or gastrointestinal cancer. They were randomly assigned to one of two care groups. One group received early palliative care integrated with cancer care. The other received cancer care alone.

The patients were evaluated at 12 and 24 weeks after diagnosis. At 24 weeks, the early palliative care patients were much more likely to report using active and engaged coping styles than the standard cancer care patients.

Early palliative care patients also had much higher quality of life and lower levels of depression at 24 weeks, but not at 12 weeks, the study found.

Thirty percent of early palliative care patients said they had discussed end-of-life care preferences. Just 14 percent of standard care patients had similar talks.

The study was presented recently at an American Society of Clinical Oncology (ASCO) meeting in San Francisco. Findings presented at meetings are generally viewed as preliminary until they’ve been published in a peer-reviewed journal.

“What we found was the patients who received early palliative care were more likely to use adaptive coping strategies — meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis,” lead author Joseph Andrew Greer said in an ASCO news release.

“Palliative care is a key ingredient to improving a quality of life, which is important to both patients and their families,” said Greer. He’s clinical director of psychology and a research scientist at Massachusetts General Hospital.

ASCO spokesman Dr. Andrew Epstein said these findings help show the benefits of integrating palliative care into cancer care.

“A diagnosis of cancer is never easy for patients, so it is promising that we now have a strategy of early palliative care that can help patients cope while improving their quality of life,” Epstein said.

More information

The Center to Advance Palliative Care has more on palliative care.

Complete Article HERE!

Musings on Mortality: Difference between suicide, medical aid in dying

By Deborah Alecson

There is a profound difference between suicide and medical aid in dying, otherwise known as death with dignity. It is not a matter of semantics.

Death with Dignity Campaign

In a death-phobic culture such as ours, one in which we prevent ourselves from projecting into our dying time, we cannot grasp the distinction. True, both result in the taking of one’s own life, but one is an act of desperation and self-destruction, while the other is an act of self-love. How can choosing death over life be motivated by self-love, you are wondering. We will explore this later in the column.

People commit suicide often in the prime of their lives because living for them is unbearable. Unlike the terminally ill who choose medical aid in dying, people who seek to commit suicide are not in their dying time but in their living time. More often than not, there are underlying and unresolvable emotional and psychological torments. There is depression or a psychiatric illness that has not been or cannot be treated. For the elderly, suicide can be motivated by the suffering that comes from living a compromised life without the support of family, friends, or community. Loneliness and feelings of abandonment are factors in suicide, especially for the elderly.

Suicide is considered a failure of the person and of our society. Help was needed and not found. In our culture, suicide is to be prevented at all costs including the involuntary psychiatric hospitalization (or incarceration depending on how you view that which is “involuntary”) of the person who discloses his or her suicidal thoughts. There are consequences for a patient in therapy to even talk about suicide: The therapist must report him or her to the authorities. The horrible irony is that the one place a suicidal person can get help to understand his or her own feelings, with a therapist, is the one place where he or she can’t talk about these feelings.

In a death-phobic culture, thoughts of suicide are considered aberrant. But let’s be honest, who hasn’t thought about suicide at least once in their life?

The will to live is an instinct of such force that human beings kill other human beings to stay alive. Human beings accept life-prolonging treatments during what would be their natural dying time that in the end, diminish the quality of time that they had bought with more treatment. People will do unbelievable things to ensure their own survival.

So, choosing to die under the weight of the instinctual and societal will to live is either accomplished out of sheer terror of life itself or incredible courage. Courage to venture into the unknown.

Since most of us have not been around dying people and as I wrote earlier, rarely imagine ourselves in that situation, we have no idea what dying is like. We don’t understand what it asks of us and what it takes out of us. While hospice care can be a possibility for how we live our dying time, it is not for everyone.

Medical aid in dying is now possible in five states. This means that people who are dying of a terminal illness can request a lethal dose of medication to end their own lives. Those few terminally ill patients who request and qualify for medical aid in dying do so to have a dignified death on their own terms. That’s all. This choice is a logical, sound, and deeply compassionate act of relief, not a desperate escape of a circumstantial situation as suicide often can be.

How can choosing death over life be motivated by self-love? When your dying time comes, you may want to spare yourself and your loved ones a prolonged and brutal decline. This to me is self-love. It is not suicide.

Complete Article HERE!

How To Fight For Yourself At The Hospital — And Avoid Readmission

By Judith Graham

Hands of an older woman in the hospital

Everything initially went well with Barbara Charnes’ surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

“I didn’t see a way forward; I thought I was going to die, and I was OK with that,” Charnes remembered, thinking back to that awful time in the spring of 2015.

Her distraught husband didn’t know what to do until a longtime friend — a neurologist — insisted that Charnes return to the hospital.

That’s the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often institutions don’t take the reality of seniors’ lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

“People tell us over and over ‘I wasn’t at all prepared for what happened’ and ‘My needs weren’t anticipated,’” said Mary Naylor, director of the New Courtland Center for Transitions and Health at the University of Pennsylvania.

It’s a mistake to rely on hospital staff to ensure that things go smoothly; medical centers’ interests (efficiency, opening up needed beds, maximizing payments, avoiding penalties) are not necessarily your interests (recovering as well as possible, remaining independent and easing the burden on caregivers).

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Here’s what doctors, health policy experts, geriatric care managers, older adults and caregivers recommend:

Start Planning Now

Planning for a transition home should begin as soon as you’re admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so have someone you trust ask your physician how long you’re likely to be hospitalized and whether you’ll be sent home or to rehabilitation afterward.

Ask if a physical therapist can evaluate you or your loved one at the hospital. Can you get out of bed by yourself? Walk across the room? Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you require?

Request a consultation with a nutritionist. What kinds of foods will and won’t you be able to eat? Does your diet need to change over the short term, or longer term?

Consider where you’ll go next. If you or your loved one is going to need rehabilitation, now is the time to start researching facilities. Ask a hospital social worker for advice or, if you can afford it, hire a geriatric care manager (now called aging life care professionals) to walk you through your options.

Before Being Discharged

Don’t wait to learn about the kind of care that will be required at home. Will a wound need to be dressed? A catheter need tending to? What’s the best way to do this? Have a nurse show you, step by step, and then let you practice in front of her — several times, if that’s what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous blood clot. But when it was Williams’ turn to give the injection on her own, she panicked.

“I’m not a medical professional: I’ve only given allergy shots to my cats,” she said. Fortunately, Williams found a good instructional video on the Internet and watched it over and over.

Make sure you ask your doctor to sit down and walk you through what will happen next. How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don’t be afraid to say, “Please slow down and repeat that” or “Can you be more specific?” or “Can you explain that using simple language?” said Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University’s School of Medicine.

Getting Ready To Leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions, take good notes and stand up for your interests — especially if you feel unprepared to leave the hospital in your current state, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you’ll be taking at home, if you haven’t done so already. Bring in a complete list of all the prescriptions and over-the-counter medications you’ve been taking. You’ll want to have your physician or a pharmacist go over the entire list to make sure there aren’t duplicates or possibly dangerous interactions. Some hospitals are filling new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out if equipment that’s been promised has been delivered. Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed such as disposable gloves or adult diapers? A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home health care nurses be coming to offer a helping hand? If so, has that been scheduled — and when? How often will the nurses come, and for what period of time? What, exactly, will home health caregivers do and what other kinds of assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, cell phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health agency. If something goes wrong, you’ll want to know who to contact.

Don’t leave without securing a copy of your medical records and asking the hospital to send those records to your primary care doctor.

Back At Home

Seeing your primary care doctor within two weeks should be a priority. “Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important,” said Dr. Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you’ve just been in the hospital.

Adjust your expectations. Up to one-third of people over 70 and half of those over 80 leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they’ll experience problems with memory and attention. Returning to normal may take time or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home health agency to help arrange these visits. Often, they won’t offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation, which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling like she’d never recover her sense of herself as an independent person was most difficult.

“I felt that my life, as I had known it, had ended,” she said, “but gradually I found my way forward.”

Complete Article HERE!

The sobering thing doctors do when they die

By Carolyn Y. Johnson

The sobering thing doctors do when they die

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly more time in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” Craig C. Earle wrote in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it’s much harder to write a prescription.

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