Five questions with end-of-life doctor

 
By Carmela Fragomeni

[A]merican palliative care doctor and end-of-life activist Bruce (B.J.) Miller was in Hamilton Thursday to talk about Life Before Death.

The free event was part of Hamilton Health Sciences’ new twice-a-year speakers’ series called GreatBigIdeas.

Miller has made it his life’s mission to improve end-of-life experiences for people and their families after an accident in his early 20s left him close to death and a triple amputee.

The Spectator spoke with Miller before his presentation.

Q — Why do you say you have a formal relationship with death?

A — I’ve come close enough to acknowledge it and by acknowledging death, it begins a relationship. You begin to relate to “nothing lasts forever”…I can comment on what it’s like to lose because of my own injuries…We can’t control everything — I chose to keep that in mind as I traverse the day. It helps me live more fully and appreciate what I have while I still have it…Loss is hard. It also proves how precious life is in the first place, which encourages us to enjoy it while we have it.

Q — Why does the health system not serve the dying very well?

A — By choosing to wage war on disease, we end up feeling like losers when we’re not curable and when we die. It’s a shaming…The system does incredible work on cures. But it abandons the people who are no longer fixable. This adds an extra layer of sadness that is unnecessary.

A — How can we make dying a better experience for all of us?

Acknowledging it and pulling it out of the closet …normalizing it, I think that would help…Stop dividing medical issues from social issues…I worry about all the wisdom that languishes in nursing homes. I worry that no one listens.

Q — You say you don’t have to be dying to benefit from palliative care. What do you mean?

A — Everyone conflates palliative care with end of life…Palliative care is about timing in the face of illness and quality of life. It includes end of life but is not focused on it. Hospice is devoted to the end…Palliative care is not running away from death but not focusing on it either.

Q — How can someone live well when facing imminent death?

Well, that process begins before (facing death). If you crafted a world view that includes death, you won’t be surprised when your time comes. That way your persona can remain intact and you can stay whole to the end…even as your body crumbles. If you see death as an unnecessary force, you’ll find yourself at odds with yourself.

Complete Article HERE!

New research identifies a ‘sea of despair’ among white, working-class Americans

Princeton economists Angus Deaton and Anne Case continue to report on sickness and early death among white, middle-aged, working-class Americans.

Sickness and early death in the white working class could be rooted in poor job prospects for less-educated young people as they first enter the labor market, a situation that compounds over time through family dysfunction, social isolation, addiction, obesity and other pathologies, according to a study published Thursday by two prominent economists.

Anne Case and Angus Deaton garnered national headlines in 2015 when they reported that the death rate of midlife non-Hispanic white Americans had risen steadily since 1999 in contrast with the death rates of blacks, Hispanics and Europeans. Their new study extends the data by two years and shows that whatever is driving the mortality spike is not easing up.

VIDEO: Here’s what you need to know about the life expectancy drop

The two Princeton professors say the trend affects whites of both sexes and is happening nearly everywhere in the country. Education level is significant: People with a college degree report better health and happiness than those with only some college, who in turn are doing much better than those who never went.

Offering what they call a tentative but “plausible” explanation, they write that less-educated white Americans who struggle in the job market in early adulthood are likely to experience a “cumulative disadvantage” over time, with health and personal problems that often lead to drug overdoses, alcohol-related liver disease and suicide.

“Ultimately, we see our story as about the collapse of the white, high-school-educated working class after its heyday in the early 1970s, and the pathologies that accompany that decline,” they conclude.

The study comes as Congress debates how to dismantle parts of the Affordable Care Act. Case and Deaton report that poor health is becoming more common for each new generation of middle-aged, less-educated white Americans. And they are going downhill faster.

In a teleconference with reporters this week, Case said the new research found a “sea of despair” across America. A striking feature is the rise in physical pain. The pattern does not follow short-term economic cycles but reflects a long-term disintegration of job prospects.

“You used to be able to get a really good job with a high school diploma. A job with on-the-job training, a job with benefits. You could expect to move up,” she said.

The nation’s obesity epidemic may be another sign of stress and physical pain, she continued: “People may want to soothe the beast. They may do that with alcohol, they may do that with drugs, they may do that with food.”

Similarly, Deaton cited suicide as an action that could be triggered not by a single event but by a cumulative series of disappointments: “Your family life has fallen apart, you don’t know your kids anymore, all the things you expected when you started out your life just haven’t happened at all.”

The economists say that there is no obvious solution but that a starting point would be limiting the overuse of opioids, which killed more than 30,000 Americans in 2015.

The two will present their study on Friday at the Brookings Institution.

“Their paper documents some facts. What is the story behind those facts is a matter of speculation,” said Adriana Lleras-Muney, a University of California at Los Angeles economics professor, who will also speak at Brookings.

She noted that less-educated white Americans tend to be strikingly pessimistic when interviewed about their prospects.

“It’s just a background of continuous decline. You’re worse off than your parents,” Lleras-Muney said. “Whereas for Hispanics, or immigrants like myself” — she is from Colombia — “or blacks, yes, circumstances are bad, but they’ve been getting better.”

David Cutler, an economics professor at Harvard who also will be discussing the paper at Brookings, said the declining health of white, working-class Americans suggests that Republican plans to replace the Affordable Care Act are akin to bleeding a sick patient. As he put it, “Treat the fever by causing an even bigger fever.”

Whites continue to have longer life expectancy than African Americans and lower death rates, but that gap has narrowed since the late 1990s. The picture may have shifted again around the Great Recession, however: Graphs accompanying the new paper suggest that death rates for blacks with only a high school education began rising around 2010 in many age groups, as if following the trend that began about a decade earlier among whites.

White men continue to die at higher rates than white women in every age group. But because women started with lower death rates, the recent mortality increase reflects a greater change in their likelihood of dying early. The numbers reported by Case and Deaton suggest that white men today are about twice as likely as they were in 1999 to die from one of the “diseases of despair,” while women are about four times as likely.

Case and Deaton play down geography as a factor in the epidemic. Yet they note that white mortality rates fell in the biggest cities, were constant in big-city suburbs and rose in all other areas. The Washington Post’s analysis published last year highlighted the same geographical signature, with a break in death rates between the two most urban classifications (big cities and big-city suburbs) and the four less urban classifications, which The Post described as an urban-rural divide.

Last week, the Centers for Disease Control and Prevention published a report on U.S. suicides by level of urbanization between 1999 and 2015, a period in which 600,000 Americans took their own lives. The report showed rising rates in each of the six urbanization classifications but found “a geographic disparity” in which rates increased as urbanization decreased. That urban-rural divide appears to have widened, particularly in recent years, the CDC reported.

Complete Article HERE!

How to Die Well

By Jessica Nutik Zitter

[I] first met Stephanie in the Intensive Care Unit. She was an urgent admission — in shock, her blood pressure was almost unmeasurable. Over the previous month, the rate of cancerous fluid building up around her lungs had increased. She had used the permanent drainage tube in her chest wall more frequently to manage her shortness of breath. But in the process, she had made her blood pressure dangerously low. She was unconscious and mumbling incoherently. Her kidneys and liver weren’t getting enough blood and were effectively dying. We worked quickly. And we were lucky enough to be able to rehydrate her before her organs became permanently damaged. Slowly, she woke up again. We had saved her.

Stephanie was a 60-year-old wife, mother and grandmother. She loved life. Wine tastings, gardening, spending time with her family — this didn’t stop when she was diagnosed. When she had learned that the cancer had spread to the other lung and brain, she took a deep breath and went back into the ring to fight. She signed up for more chemotherapy. If she worked hard, she thought, she could beat it.

I wanted to celebrate with Stephanie and her family — she was no longer in critical condition — but I couldn’t. Our “fix” wasn’t going to change the fact that her cancer would continue to worsen. And fast. More chemotherapy would not save this woman. I had to tell her the truth.

When I walked into the room, Stephanie’s daughter Becky was giving her a massage. I thought of a manager preparing his boxer to return to the ring. “We’re ready to get back in there and fight,” Becky told me. “Bring on the chemotherapy.” Stephanie looked tired, but nodded. I took a deep breath and sat on the side of the bed.

I explained that it was only a matter of time before Stephanie’s organs failed again. The next time, she probably wouldn’t be so lucky. The corners of Stephanie’s mouth pointed down, like two arrows, and I wasn’t sure if she was getting ready to cry or yell. “Please leave,” Becky said.

I had done the right thing, but nonetheless I felt ashamed. I wasn’t the doctor they had been hoping for. I wasn’t their hero.

We all know we will die. But somehow none of us believes it. This is a serious obstacle to dying well.

To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture.

Two days later, I went upstairs to check on Stephanie and her family. I was no longer responsible for the case. Still, I worried that I had upset them, and I wanted to check in. I was dreading it.

But when I reached the room, there was Stephanie sitting in a wheelchair, smiling. She was going home that day. The family had had some time to absorb the news, and then they had changed the course of care. They had met with a hospice service. No more hospitals. No more chemotherapy.

Stephanie enjoyed the last two months of life with the support of hospice, her family and several bottles of good wine. Her funeral, which I attended, was replete with wonderful stories and not an ounce of regret. She died in my arms, Becky said, and it was as loving and peaceful a death as you could imagine.

Stephanie’s last couple of months might have looked very different. Like many of my patients, she could have died attached to machines. She could have been isolated from her family instead of in a cozy bed in the middle of the living room. And rather than the taste of wine and crackers, she could have had breathing and feeding tubes filling her mouth.

I’ve seen so many patients, so many lives, so many deaths. Far too few have the opportunity to live the life they would choose all the way through to the end. I believe deaths like Stephanie’s should be the rule, rather than the exception. And that is going to take some work from all of us — in the form of reflection, preparation and collaboration.

When it comes to death and dying, the answer is found in honest communication and human connection rather than technology and protocols. We’ve achieved amazing things in modern medicine. Our tools can serve to bring the dying back to life. But too often they take life away from the dying.

Complete Article HERE!

Guidelines a great resource for end-of-life care for pets

Guidelines a great resource for end-of-life care for pets

By Dr. Henri Bianucci and Dr. Perry Jameson

It is hard not to take my (Perry Jameson) personal experiences and apply them to my work as a veterinarian. One of the most difficult times in my life was when my mom was diagnosed with metastatic renal cell carcinoma.

She was a healthy woman in her 50s who was still teaching third-graders and playing tennis. Mom developed a mild persistent cough and soreness in her hip. At first, they thought she had bronchitis and pulled a muscle playing tennis. When her symptoms did not resolve as expected, the doctors started looking further and, unfortunately, found she had a kidney tumor that had spread to her hip bones, lungs and spine.

At the time there was no effective therapy for this cancer and she progressively worsened over the next eight months. I would drive home every other weekend to help my sister and Dad, who were caring for her. As we struggled with her end-of-life care, I kept asking myself that certainly we were not the first family to face this and there must be someone out there to guide us.

Finally when her oncologist realized she was going to die soon, he recommended we get in touch with hospice. They came in and immediately were able to make her more comfortable and teach us how to do the same. Unfortunately, this was only during the final two weeks of her life.

In my practice, we deal weekly with patients who have cancer, heart failure, renal failure and other terminal illnesses. We do our best to help guide pets and their parents through this end-of-life stage. Last year, the American Animal Hospital Association, along with the International Association for Animal Hospice and Palliative Care, released guidelines to help veterinarians with end-of-life care for pets.

These guidelines were a collaboration of ideas and experiences from multiple university and private practice hospitals. As with my experience with my mom, it was a realization that we were not the only animal hospital dealing with this and we could learn from others how to help with this stage of a pet’s life.

Their first focus was to recognize that the end of life is, in fact, a stage of life. Just as juvenile, adult and senior are recognized stages, so is this final life stage. The importance of this is by recognizing earlier when a pet reaches this stage we can institute animal hospice sooner.

The authors developed the Animal Hospice Care Pyramid (http://bit.ly/2lwl55K) to display the different needs of a pet during the final stage of life. At the base are the physical needs of the patient. The middle section stresses the social needs, while the top emphasizes the emotional needs. All three areas must be considered when trying to bring quality to the end of a pet’s life.

The physical needs always seem obvious, but it is good to have a list to make sure we do not miss anything that may help them be more comfortable. These needs are pain management, control of any clinical signs (e.g. nausea), hygiene, nutrition, mobility and providing a safe environment.

Pets are social; they want to be around other family members, especially when they are not feeling well. This portion of the pyramid reminds us to ensure the pet is able to interact with its family, including other pets, and has some form of mental stimulation. When our Lab, Ariel, was near the end of her life and had difficulty walking, we put her bed in the middle of the den. This way she could watch all that was going on and we could easily interact with her.

The top of the pyramid stresses the importance of the pet’s emotional well-being. By supporting the social and physical needs most of their emotional needs will be met. Preserve their dignity by minimizing and cleaning up any house soiling as soon as possible. Pets are most comfortable with the same routine, so by keeping the same patterns you did before their illness, you will reduce their stress. Most pets are there to be our companion, so by keeping them as part of the family, you will encourage their will to live.

This guide also helps with when we make a decision about ending our pet’s life. If we can no longer meet their physical needs (comfort, they stop eating), and they withdraw from the family, then they are no longer enjoying life.

The goal is to make this final stage of our pet’s life the best it can be, but to also aid us when to say goodbye. Our pets do not live as long as we do so everyone pet parent will need these guidelines sooner or later.

Complete Article HERE!

5 ways to improve care at the end of life

By Kathleen G. Sebelius and Tommy G. Thompson

[A]ll of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.

The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication.

As baby boomers continue to age, swelling the ranks of the elderly and those near death, how seriously ill people approaching the end of life are cared for must be reformed. We had the honor of chairing the Aspen Health Strategy Group, composed of 23 experienced leaders in health care, technology, and the media, as it explored ways to improve care at the end of life. Here are five of the transformative ideas we included in the group’s report, “Improving Care at the End of Life.”

Emphasize planning for the inevitable. Creating an advance directive and speaking to loved ones about end-of-life care wishes should be as natural and commonplace as financial planning. Far too many care decisions are made by family members who are only guessing at the wishes of their loved ones. It’s awkward to talk about death and dying, but necessary. By integrating advanced care planning into things we already do in our daily lives like using smartphones or making employee benefit decisions, we can encourage these much-needed conversations.

Refine Medicare coverage. Two serious gaps in health insurance coverage threaten many people facing the end of life. Medicare does not provide coverage for social supports, like breaks for family caregivers, or for the coordination of care. Medicare policy should be changed to include benefits for those diagnosed with advanced illness that provide social supports and care coordination through a defined care team. This kind of coverage would encourage team-based organizations to meet the needs of patients. Medicare should test the integration of its hospice benefit into Medicare Advantage and other demonstrations. Improving efficiency and delivery will help those who are seriously ill get the care they need — and help their caregivers deliver it — without jumping through hurdles and battling a bureaucracy not designed with their circumstances in mind.

Measure the effectiveness of end-of-life care. Only by understanding how well health care and social services support individuals at the ends of their lives can we understand, demand, and reward good performance by their caregivers. So we need to develop metrics that can provide accountability and transparency. In addition to measuring the quality of care, these metrics must also measure patient preferences and families’ experience as they care for their loved ones.

Train more clinicians in palliative care. Graduate medical education includes little training on the needs of patients in the last years or days of their lives. We need to create financial and professional incentives to expand the number of doctors, nurses, nurse practitioners, social workers, and other health care professionals who have the right training to effectively and compassionately provide end-of-life care.

Get community input on better models of care. Addressing this urgent need will create disruptions in how health care is delivered. Leadership by policymakers and private sector leaders is required to improve end-of-life care, but so is a social consensus that such a change is needed. This can happen only at the local level. Some communities will rise to this challenge. Those that do so successfully should be held up as examples and the lessons they learn shared with others seeking to achieve the same ends.

We sincerely hope that health care policy leaders will take this problem head-on. Much more can be done to make sure that all Americans die according to their wishes and with dignity. By implementing the ideas outlined above, we can make important strides to that end.

Complete Article HERE!

What does my family need to know about end-of-life care?

By Sunrise Senior Living

[T]he loss of a loved one is always a somber experience, but thankfully, due to the continuing advancements in health services, the number of Americans that are able to spend their final days in a comfortable and controlled setting is growing.

End-of-life care allows individuals to experience that final chapter in life with a dignified and calm feeling, as well as offer family members that peace of mind, support and a sense of comfort that can help ease that sorrow during this time. Being informed and conscious of this subject makes taking those steps in coordinating this care much easier and straightforward for everyone involved.

When is it time?
There are many conditions in existence that over time can become increasingly difficult and expensive to treat. This not only can be a burden for the patient, but can also create a painful and challenging experience as well. While deteriorating conditions and intolerable discomfort are two chief concerns when considering hospice care for a loved one, things such as complicated health care needs, sustained pain, and loss of mobility or capacity are also matters that should be taken into account.

It is hard to decipher the “right time” when deciding to make the decision to begin end-of-life care. Each and every family has a different approach and belief that can affect their decision. Ultimately, this choice is one that is deeply personal and involves tough choices for the whole group.

What does end-of-life care look like?
There are several types of end-of-life care available. Hospice care is for individuals that are nearing the end of their lifetime, with a terminal prognosis of six months or fewer. Palliative care is one that is more fitting for older adults living with a chronic condition and are in need of relief from the on-going pain and symptoms. In some cases, families may also choose to provide end-of-life care from home.

In either case, a full team of medical professionals and support staff work around the clock to make sure that patients are as comfortable and well-cared for as possible. Every facility is different, which means that nurses and doctors may be supported by home health aides, spiritual counselors and social workers depending on the circumstance.

With that being said, there are people dedicated to helping family members navigate this new challenge and providing guidance with whatever might come next.

Paying for end-of-life care
The Kaiser Family Foundation reported that hospice care is covered by Medicare for eligible older adults, usually individuals with a terminal diagnosis. This organization makes affording end-of-life care easier for many families.

Other than that, Medicaid, private insurance and other sources of payment such as a pension or retirement fund may be used to pay for these services. Families should discuss different payment models and work with a knowledgeable provider to uncover all available options.

Selecting the right partner
One thing families should understand when facing the possibility of end-of-life care is being aware of all available resources available that offer support and guidance during this difficult time. The care professionals at Sunrise Senior Living can advise and help coordinate care for an older loved one. With the help of Sunrise, the best, most appropriate end-of-life care can be identified and any transition can be made as smooth and as comfortable as possible.

Complete Article HERE!

Americans want assisted suicide

Rev. Nancy Butler

On Wednesday the Rev. Nancy Butler of Riverside Family Church in Hartford died voluntarily. For two years she had been suffering the debilitating effects of ALS even as she continued to pastor the evangelical church she established in 2008 as “theologically open minded, diverse, empowering women and affirming of LGBT people.”

The letter she wrote to her flock last week begins:

I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn’t know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.

I am a little surprised God is confirming this decision. Nice to know He isn’t a sadist. He is oh so tender right now. He tells me my work is done and it’s the right time to come home.

Having a feeding tube removed does not legally count as assisted suicide, but we shouldn’t be fooled by the passive voice. Someone took the tube out, very likely a medical professional. Nancy Butler died of her own will, with assistance.

So did my mother Bernice, who consulted with her internist before deciding to stop eating and drinking six years ago. She was facing a painful death from peritoneal cancer and chose instead to end her life voluntarily. That was not, technically, assisted suicide either.

Assisted suicide is defined as “knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.”

Most Americans have no problem with that, so long as the person is facing a painful terminal disease. Indeed, according to a new study from LifeWay Research, fully two-thirds of them find it morally acceptable.

To be sure, a moral distinction can be drawn between providing a person with a lethal drug and withholding or withdrawing treatment or sustenance. But it’s a distinction without a difference, as far as most are concerned.

The moral issue, it seems, is not how death comes about but whether the terminally ill get to choose. The answer, increasingly, is yes. That goes for 70 percent of American Catholics, whose church has worked hard and with some success to prevent state approval of assisted suicide laws.

“The concept of physician-assisted suicide is a major affront to the teachings of the church,” Michael C. Culhane, executive director of the Connecticut Catholic conference, said last year.

But as a matter of public policy, the argument ought to be prudential. Will terminally ill persons be hustled into the next world without their really wanting to be?

The best empirical evidence we have in the U.S. comes from Oregon, where assisted suicide became legal in 1998. Since then, the annual number of legally sanctioned suicides has risen from 16 to 132, with a doubling since 2010.

That’s under four percent of Oregonians who died last year. Of them, 77 percent were dying of malignant cancers and 9 percent had ALS — as has been the case throughout the history of assisted suicide in the state.

I know that my mother chose what she wanted, and I’m confident that Nancy Butler did too. I’m with most other Americans in not wanting to stand in the way of those terminally ill persons who choose to do the same by way of lethal prescription. I cannot speak for God.

Complete Article HERE!