Category: Quality of Life

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Having Sex Boosts Old People’s Health

—We Should Be Talking About It

By and

Humans are sexual beings. This urge does not stop when the clock strikes 60. Or even 90.

Young adults may deny older relatives are having sex, but sexual activity is a strong indicator of healthy aging and vitality. In fact, sexual activity is roughly equal to climbing two flights of stairs.

Sex education and research use a medical model of sexual health focusing mainly on pregnancy, sexually transmitted infections (STIs), and sexual dysfunctions. However, sexuality is complex. Beyond genitals and Kama Sutra-like positions, it considers sexual and gender identity; sensuality; sexual response; intimacy; and positive and negative ways we use our sexuality.

Our research has explored sexuality among older adults experiencing healthy aging and also aging with health challenges. We found that older adults who routinely talk with health care providers about sexual matters are more likely to be sexually active, despite sexual dysfunctions or other health issues. These conversations become more important considering high HIV/AIDS and STI rates, even among older adults in the U.S.

Sexuality is complex

As we age, the complex interplay among biological, psychological, cognitive, socioeconomic, religious and even societal factors, contribute to changes in our roles and responsibilities. For example, changes in physical or cognitive health over time can create differences in analytical thinking, mobility, and health care needs. We also experience changes in work, social and family roles and responsibilities over time. Examples include transitions from working to retirement, parenting to empty-nesting, child-rearing to caring for aging parents or partners.

These changes may alter our sexual desires, expression and the frequency in which we engage in sexual activities with partners. For example, sexual functioning and activity may decrease over time, but having open communication with a partner who is responsive to our needs can increase our feelings of intimacy and desire, and in turn stimulate sexual activity.

Evolving social support and activities may change opportunities for sex and intimacy. Partners may disappear through death or moving away, or appear, such as when meeting new people after moving to an aging community. Over one-third of adults over age 65 use social media or internet technologies. These tools may expand sexual interest or activities by increasing access to sexual aids and partners.

Sex after 60

There are myths, misconceptions and stigma associated with aging and sexuality that hinder older adults’ ability to openly communicate with family, friends and health care professionals. This misinformation limits their access to sexual education, health care, and ultimately, their sexual rights.

The first myth is that older adults are not as sexually attractive or desirable as their younger counterparts. While an 80-year-old may not be as appealing to an 18-year-old, he or she may be very desirable to peers. More importantly, he or she may feel more sexually desirable and confident than their younger self.

A second myth is that older adults lack interest in and desire for sexual activity—and that they are somehow asexual. Research from ongoing national surveys support the ideas that sexual interest, desires and behaviors can decrease over the life course. For example, among women ages 57 years and older, over 80 percent of participants expressed interest in having sex, but less than two-thirds of women surveyed perceived sex as “important,” and fewer than half reported having sex in the previous year. However, the reality is that these trends are not universal among older adults. Results from another recent survey found that 39 percent of men and 17 percent of women ages 75 to 85 years are sexually active.

Another myth is that older adults are so medically fragile that sexual activity is dangerous. This is simply not true in many cases. Recent studies have shown that healthy older adults are more likely to have sex. Even when chronic illnesses are present, sexual abstinence is not a foregone conclusion. For example, a 2012 American Heart Association statement contains evidence-based recommendations about sexual activity among patients with specific cardiovascular conditions. The recommendations generally advise assessing risks with a doctor and disease management, rather than abstention.

There are well-documented relationships between common medical conditions such as heart disease or diabetes and treatment-related effects on sexual functioning. Yet, older adults and their health care providers are not discussing sexual concerns during routine care. Missed opportunities during visits deprive older adults of access to newer treatments and other best practices in sexual medicine, which can impact their mental and physical health.

A bigger problem may be ageist attitudes among providers and internalized ageism in their patients that may interfere with sex education and application of newer standards. The result is that many believe older adults are uninterested in, or lack desire for, sexual activity and cannot engage in these activities.

Love has a lot to do with it

There is more to sexuality than physical acts. While much of the existing research focuses on sexual activity and intercourse as predictors or outcomes, most older adults also desire companionship, intimacy and closeness. Non-intercourse-focused activities, such as hand-holding, cuddling and massage, have not been studied as much as intercourse. Yet, there is reason to believe that they can enhance intimacy. Research about physical and mental health outcomes resulting from older adult sexual activity reveals additional benefits, including reduced cognitive decline, loneliness and depression, and improved reported health status, physical functioning, and other aspects of quality of life.

Recent studies also reveal that sexually active older adults are more likely to communicate needs and concerns with health care providers and have them addressed. Providing high-quality sexual health care requires providers to take comprehensive sexual health histories from older patients and engage in direct, positive communication concerning gender and sexual identity, and sexual knowledge, beliefs and practices.

Discussions should promote understanding about sexual risk behaviors for STIs and effects of physical and cognitive or psychological aging on sexual health and sexuality. To maintain or improve older adults’ sexual health and well-being, health care providers should provide safe and welcoming environments for patient-provider collaboration, resources and interdisciplinary referrals to clinical social workers, sex therapists, physical therapists and other allied health specialties.

Complete Article ↪HERE↩!

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Being Mortal

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

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Ten Facts About Medical Aid in Dying

By David R. Grube, MD

Introduction

Oregon’s 1994 Death with Dignity Act (ORS 127.8 ff) was the nation’s first law authorizing mentally capable, terminally ill adults with 6 months or less to live to request a doctor’s prescription for medication they could decide to take to peacefully end their suffering if it became unbearable.

It was enacted in 1994 and taken into effect in 19971. Since then, 6 more states—Washington, Montana, Vermont, California, Colorado, and Hawaii (Hawaii’s law does not take effect until Jan. 1, 2019) and the District of Columbia (DC)—have authorized medical aid in dying. Pies and Hanson, in a recent article in MD Magazine® (July 7, 2018), presented 12 myths (sic) about this medical practice.2
 
I practiced family medicine in a small rural Oregon town from 1977 to 2012. In 1999, a patient asked me if I would honor his request for a “death with dignity.” He was a long-time patient who was dying of cancer; he had had surgery, radiation, and chemotherapy, but his cancer was incurable and advanced. He was enrolled in hospice, but his symptoms became intolerable, leading to his request to me.

At that time, I had been in practice for more than 20 years. I did ultimately prescribe the aid-in-dying medication, and he died very peacefully at home with his wife and children at his bedside. They continue to thank me now, almost 20 years later.
 
Those of us who have participated in the practice of medical aid in dying have a different perspective than those who theorize about it. Pies and Hanson cite a 20-year-old article3 regarding the psychological and emotional effects upon US oncologists who participate in euthanasia and PAS. In fact, euthanasia—which unlike medical aid in dying requires someone other than the dying patient to administer the medication—is illegal in the United States. In my role as the National Medical Director for Compassion & Choices and our Doc2Doc consultation program, I speak to scores of physicians who have practiced medical aid in dying. 

All of them are sincere, all are compassionate, none of them take this action lightly, and none have reported instances of regret or depression. 
 
1) People who request medical aid in dying usually do so because they are experiencing loss of dignity, anhedonia, and inability to control the “end of their life story.”
 
Pies and Hanson are correct in reporting that pain is not usually in the top 3 reasons why individuals request medical aid in dying in both Oregon and California. Autonomy is no. 1: these individuals are suffering, dying persons who feel that they have no control over their imminent death (which their physicians confirm). They do not want to die in a hospital. They are knowledgeable of their options. They do not want to depend upon others for symptom management, and indeed, by their own report, their symptoms are unmanageable.

Pies and Hansen report that many patients who request medical aid in dying are clinically depressed, but this assertion is false. By law, they are required to be evaluated for the mental capacity to make rational decisions by their physician and a second (consulting) physician. In addition, they often are in hospice, so they also are evaluated by their hospice medical director, their hospice nurse, their chaplain, their social worker, etc. They do not have a major depressive disorder; rather, they are grieving normally. They cannot “be successfully treated, once properly diagnosed.”1 They are terminal.
 
2) In Oregon, 6 other states, and D.C. with similar laws, there are adequate safeguards to ensure proper application of medical aid in dying. 
 
Oregon’s Death with Dignity Act, now in effect for 2 decades, is analyzed annually by the Oregon Health Authority1 and it has never needed to be changed. It adequately protects individuals from coercion, abuse, or inappropriate use.  Why is this statement true? There are core safeguards in place to protect vulnerable populations, so many in fact that they are also recognized as significant barriers for dying people to access the law. Many dying patients in Oregon are unable to utilize the Death with Dignity Act because they die before the entire process can be completed and doctors can be reluctant to practice because of the paperwork.  
 
3) The conversation about the option of medical aid in dying is palliative in and of itself
 
A healthy doctor-patient relationship is founded upon open communication and trust. In end-of-life care, the ability to discuss all options allows for exploration, and hopefully, fulfillment of the patient’s wishes and values. Many patients and doctors discuss medical aid in dying, even if the patient ultimately does not make a request for a prescription. Physicians who are willing to openly explore a patient’s requests can learn much that can help her or him to provide quality care at the end of life.

In all jurisdictions where this palliative, end-of-life care option is authorized, approximately two-thirds of patients who go through the process required by the Oregon Death with Dignity Act ultimately take aid-in-dying medication; one-third do not take the medication,1 but they want to know that they have the option to use the medication if needed, hence, they are palliated.
 
4) Not all suffering can be satisfactorily treated with palliative medicine or hospice care
 
Quality hospice care and palliative care have improved the end-of-life experience of thousands of patients, and advances in end-of-life care continue. More improvement and resources should be dedicated to this cause. But not all suffering can be assuaged. Suffering is defined by the patient, not the doctor.
 
5) Doctors who conscientiously oppose medical aid in dying are free not to practice it.
 
Pies and Hanson discuss conscientious objection to medical aid in dying “in theory” based upon “guidelines.” Physicians who are not willing to participate in end-of-life care option are free not to practice it if it conflicts with their conscience; there is no law that requires otherwise. However, a licensed physician is bound to practice professionally and under the standards of care in their location. A professional “puts the patient first.

If a licensed physician (who does not support a patient’s option to decide to use medical aid in dying) has a request by a patient for this end-of-life care option, her or his obligation is to refer the patient to another physician for evaluation of the request. Ironically, many physicians in Oregon who do support this option for their dying patients, are unable to provide it because they are employed by healthcare systems that prohibit their doctors from practicing it. Thus, rather than physicians being coerced to practice medical aid in dying, they are prevented from honoring their dying patient’s request for it.
 
6) Language matters: medical aid in dying should not be called “suicide,” or “assisted suicide”
 
Legally, in all jurisdictions where medical aid in dying is authorized, “it is not suicide, homicide, euthanasia, or mercy killing.”1  

David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who commit suicide resulting from mental illness from those of terminally ill persons who request medical aid in dying.

“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”4  

Furthermore, there is no place in end-of-life care for language that is hurtful, angry, shaming, or that causes guilt. Language matters.

7) People requesting medical aid in dying are carefully screened to rule out depression that impairs judgment
 
Pies and Hanson are correct in reporting that most medical aid-in-dying statutes do not require a professional mental health examination, “except when the participating physician is concerned and decides to do so.” Such a requirement is unnecessary because doctors are experts in evaluating the mental capacity of their patients to make informed healthcare decisions.

Doctors make these assessments every day in routine matters and matters of life and death. And if 1 of the 2 doctors evaluating the mental capacity of a patient requesting medical aid in dying wants a third mental capacity evaluation by a mental health professional, they can easily request it. It’s important to note that all of these terminally ill patients and their families are sad, and normally grieving. But most patients do not have mental illness or a major depressive disorder. By virtue of their State Medical License, physicians who are involved in primary care are competent to diagnose mental illness, including depression that causes impaired decision-making.
 
8) In the United States, only people with terminal illness are eligible for medical aid in dying
 
In Oregon and in all jurisdictions where medical aid in dying is authorized, individuals who receive an aid-in-dying prescription must meet the eligibility criteria, including having a terminal illness. This diagnosis is determined by the attending physician and the consulting physician. In each case, these licensed doctors consider the individual situation.

A diabetic who does not want to take insulin is not a candidate; someone with anorexia nervosa, by definition, has a mental illness. Advanced dementia precludes participation because the patient is not mentally capable of making their own healthcare decisions. When a patient requests medical aid in dying, the physician investigates all of the intricacies of the request. If the patient has a disease that can be reasonably treated (diabetes, early cancer, etc.), this end-of-life care option is not appropriate.

Hence, the value of 2 physicians working in concert is not only the case, but also the law, in Oregon.

9) The basic requirements for medical aid in dying have not changed in more than 20 years

After more than 20 years of medical aid-in-dying experience in Oregon, there now is ample accumulated experience to show that the law has been safely and successfully implemented.5 In fact, ORS 127.8, the Death with Dignity Act, has not been changed, amended, or altered. Those who theorize that abuses are possible seem more concerned with “what if” than with “what is.” Experience and evidence outweighs speculation.

In point of fact, the practice of medical aid in dying in Oregon (and in others states with similar laws in effect) has catalyzed improvement in end-of-life care, a much broader discussion of end-of-life care issues, more frequent conversations between physicians and patients about their end-of-life care wishes and goals, doctor-patient relationships, and the awareness of and participation in hospice and palliative care services.

10) Since Oregon’s Death with Dignity Act took effect in 1997, more people have not died, but fewer have suffered

Since the Oregon Death with Dignity Act took effect in 1997, a total of 1967 Oregonians have had prescriptions written under the law, and 1275 patients have died from ingesting the medications.

During 2017, 143 patients used medical aid in dying, and the estimated rate of Death with Dignity Act deaths was 39.9 per 10,000 total deaths,1 which is a similar percentage to previous years.  All of these patients were about to die (had a prognosis of 6 months or less to live) and had the comfort of knowing that they could determine the final chapter of their life if their suffering became unbearable.  

Pies and Hanson concluded that “it is critical that physicians inform themselves as regards the actual nature and function … of medical aid-in-dying legislation.” I heartily agree. However, their “first step” is to “recognize and challenge the many myths that surround these…laws.”

I believe that a better first step is to learn the facts about medical aid in dying, not theoretic myths. Louis Pasteur, MD, wrote, “One does not ask of one who suffers: What is your country and what is your religion? One merely says: You suffer, that is enough for me.” A dying patient needs respect, and our comfort. We may have thought that we were trained as “healers,” but when a cure is no longer possible, care and comfort are paramount.

Complete Article ↪HERE↩!

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The language of living and dying

When it comes to caring for people with cancer, how clinicians talk about palliative care can make a huge difference to patients and their families

For many, palliative care means spending more time at home, rather than in hospital.

By Jennifer Philip

As a society, we are not very sophisticated when we talk about serious illness and death. We talk of fighting, of battling against, of staying positive and of not giving up.

Of course, this has implications for those whose illness continues or worsens. Are they losing the fight? And what does it mean about their attitude? Have they given in?

In our research, recently published in Palliative Medicine, we found the power of language is particularly poignant when it comes to how clinicians talk about end of life care. It can lead to misunderstandings, but also sadly, even tragically, to suffering and missed opportunities.

We’re looking into this at the Victorian Comprehensive Cancer Centre’s Palliative Medicine Research Group. Based at St Vincent’s Hospital Melbourne, our group brings together clinicians, researchers and allied health professionals, seeking to effect positive and systemic change in palliative care practice.

Our language around illness is reflected in the media, as we read with excitement of “a breakthrough in the fight against cancer/dementia/heart disease” – insert your illness of interest.

However, palliative care in the media and in the lives of real people, of patients, is often discussed as “there was nothing more that could be done, so they went into palliative care”.

The language that we use has direct and very serious consequences. To say that “there was no more treatment, so they had palliative care” implies that palliative care is not treatment. This language serves to limit possibilities since it negates the opportunity to choose palliative care, and the benefits that it may provide.

Why does this language matter?

Well firstly, it propagates a misperception about palliative care. Contrary to “no more to be done” and “non-treatment”, palliative care is highly effective and beneficial.

It has been proven in clinical trials to ensure better pain and symptom relief and, for many, means better quality of life than when patients are solely cared for by usual health providers such as oncology, respiratory and cardiology services.

Palliative care has also been shown to improve patients’ satisfaction with care, as they have more information and understanding of their circumstances and the choices available to them. It means they are empowered to make decisions that match their values – which, for many, means less time in hospital, and being more likely to die at home.

It can be common for doctors to avoid talking about palliative care until death is very close.

Research has shown that palliative care means that when people do die, their families experience less distress and have better health outcomes themselves.

And it means, based on a number of studies, that people live longer. Yes, palliative care improves survival – as much as a number of newer chemotherapy treatments. And all of these benefits increase if palliative care is introduced early.

None of this sounds like “no more can be done” or a “non-treatment option”. Yet because of the language used and the associated stigma, patients (and doctors) are fearful of mentioning palliative care, much less to introduce it early.

Instead, patients think that palliative care equals death, and worse still, death in an institution “where people do things to you”, as one of our research participants said; where there are no choices.

This is the very antithesis of what palliative care seeks, and is proven to do.

And so, as if even the words ‘palliative care’ will themselves, bring about death, we avoid it until death is very close. Palliative care, raised in these circumstances, becomes linked with imminent death, and the cycle of misperception and missed opportunities (and poor care) continues.

These missed opportunities may include a lifetime of valuable things to be said to someone we love, a trip to a special place, or a chance to think through whether a further round of treatment will enable achievement of an important goal.

And poor care may include pain that is not well managed for six of the last eight months, or a young child that wonders if Dad’s illness was caused by something they did.

So what needs to be done?

Clinical trials into palliative care find ensure better pain and symptom relief, and better quality of life.

We need to listen to the evidence. We need to think about the language that we use to speak about illness and death, to think about its impact for readers of today, and for patients of tomorrow.

We need to be sensitive and direct. And we need to learn to sit with the discomfort that not all is black or white, fighting or giving up, treatment or no treatment. That things that are hard to consider and face will inevitably mean hard conversations are to be had.

These conversations, though difficult, can be immensely rewarding and also may be the most important conversations for a person’s life. We all have a responsibility and a role to ensure our language facilitates understanding and choice, not its opposite.

Complete Article ↪HERE↩!

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Speak freely about realities of death, experts urge

Taboos around death and dying are increasing the risk of elderly patients “on their dying journey” being subjected to unwanted and invasive medical procedures against their wishes, experts say.

By Lucy Stone

Associate Professor Magnolia Cardona, from the Gold Coast’s Bond University, has led a PhD study into the use of rapid response system treatments on elderly hospital patients nearing end of life.

Professor Cardona said the research, published in the Joint Commission Journal on Quality and Public Safety, studied the files of more than 700 patients who received calls for medical emergency teams during hospitalisation at a large Sydney teaching hospital.

A medical emergency team usually consists of two or three specialists from the intensive care unit focused on maintaining life when a patient is in a hospital ward.

The research further focused on patients aged 80 and over, and found that 40 per cent were subjected to invasive procedures such as intubation, intensive monitoring, intravenous medications, transplants and resuscitation attempts.

Ten per cent of those patients already had medical orders in place limiting treatment, or requesting do-not-resuscitate.

“Those orders … are usually issued by their doctors in consultation with families,” Professor Cardona said.

Professor Cardona said the research showed the conflict between increasingly rapid medical advances, public perception of the capabilities of medical experts to revive or prolong life, and the emotive issue of death.

The findings were similar to those of 2017 studies conducted in Europe, but Professor Cardona said the Australian researchers had expected to find a smaller percentage of such incidents.

The research found that elderly patients in their last year of life were frequent users of ambulance and hospital services, including intensive care units, and that health professionals often felt under pressure to administer “aggressive” treatments.

“Health professionals do not always fully discuss a prognosis with families, or may lack the confidence to discuss patients’ preferences for care and treatment at the end of life,” the research said.

“They may decide to continue intensive treatment based on concerns about the family’s legal or emotional reactions, or in an attempt to avoid an in-hospital death, generally perceived as a ‘failure’.”

“Often these frequently heroic medical interventions do not improve patient survival and instead prolong suffering and adversely affect the quality of death.”

The study found that while patients under 80 years of age may benefit from such aggressive techniques, patients over 80 were less likely to benefit.

Professor Cardona also said it was critical that families and elderly people, or people with terminal illnesses, had open conversations about the decisions ahead, and wrote on paper their personal wishes, or appointed someone trusted as their medical representative.

Due to techniques such as CPR being treated as a cure-all on television shows and movies, Professor Cardona said the public often had some misconceptions about the safety and appropriateness of such techniques, particularly for elderly people.

She said the research would hopefully encourage both families and medical professionals to have fresh conversations about patient needs and values, and ensure the wishes of elderly patients were respected as they neared the end of life.

Professor Cardona said she hoped medical professionals could also think critically about the “do no harm” principle when faced with patients facing death of natural causes.

“The conclusion of the study that perhaps clinicians need to take a step back when they identify these flags of imminent death and offer a different alternative of management,” she said.

“That is the pathway of care of comfort care, and that includes giving the patient pain relief, other symptom control, psychosocial support and grief counselling for the families.

“And all of these of course preceded by an honest conversation with the patient and family about the poor prognosis, the inevitability of death and the fact that not every death should be considered a failure.

“Death is just a natural part of the life cycle.”

Complete Article ↪HERE↩!

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What does it mean to have a ‘good death’?

By

What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article ↪HERE↩!

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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.

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