By David R. Grube, MD
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↩!
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
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.
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?
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↩!
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↩!
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↩!
It’s a shift toward care based on who the patient is and what he or she wants
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?
Tiffany Chen, a fourth-year University of Massachusetts Medical School student, is a “champion” of the project, says Reidy. Growing up in a multigenerational home with parents and grandparents, Chen was first exposed to palliative care during her senior year of college when her grandfather was diagnosed with Lewy body dementia at the end of his life. Two years later, when her grandmother was diagnosed with bladder cancer, Reidy was assigned to be her palliative care doctor. Chen credits Reidy’s care with changing her grandmother’s course of treatment and the “quality of her death.”
Combined with a love of helping people, that experience inspired Chen to pursue a medical career. She hopes to go into family medicine and eventually have a fellowship that’s integrated in geriatrics and palliative care.
Chen has taken leadership at her school, including being part of organizing a focus group of students interested in giving palliative care “more of a voice.” The new curriculum, she says, promises to make students “better equipped at baseline to have these conversations.” They’ll become more adept at reading people’s cues and better communicators overall, “by first listening,” she says.
“The biggest thing is actually practicing with someone who’s experienced observing, and then giving you feedback,” Chen says. At her school, a simulation lab and new training methods, including role-playing patient actors, are key.
Reidy feels hopeful that the consortium is part of a larger movement, noting that medical schools at the University of Rochester and Yale University have stepped up as leaders.
Massachusetts offers a new model — the first time each of a state’s medical schools have joined forces. It’s this collaborative element that is having an impact on her school’s administration, says Chen. “Prior to this, you’d talk about palliative care being very important and needing to be in the curriculum, but that’s true of a lot of things.” The partnership has created momentum.
Complete Article ↪HERE↩!
Make sure to do these things while you are still able
By Lisa Fields
You’ve heard it countless times: Life is short, so appreciate each moment.
People with life-limiting diagnoses know this intimately: When they come to terms with their mortality, their priorities often change, and they may try to squeeze as much substance into their lives as they can. This often involves trying to resolve long-standing problems with loved ones and strengthening important relationships.
Very few healthy people live this way, though. We get caught up in the details of our busy lives and often forget to put things in perspective, believing that we’ll have time to sort everything out. But end-of-life experts believe that everyone should adopt some of the attitudes and values that dying patients embrace.
“It’s easy to put something off into the future,” says John Mastrojohn III, chief operating officer of the National Hospice and Palliative Care Organization. “For some, that future may not be as long as we’d like. Having meaningful conversations, or doing other things that bring joy, can have a profound impact on how we feel about ourselves and others.”
You may be inclined to delay these types of conversations if you don’t sense an imminent need. But they can positively impact your relationships and help you realize what’s most important.
“Those of us who work with people who are seriously ill have found that [saying] ‘Please forgive me,’ ‘I forgive you,’ ‘Thank you’ and ‘I love you’ — that almost always has value to people, whether relationships are fractured or strong,” says Dr. Ira Byock, a palliative care physician in Torrance, Calif., and author of The Four Things That Matter Most.
End-of-life experts believe that the following advice — which they often share with patients who are in the final weeks or months of their lives — is surprisingly well-suited for active, healthy people, too:
1. Adjust Your Priorities
You may take your friends and relatives for granted because you’re focused on a work project, your upcoming kitchen renovation or the number of “likes” that you received on a Facebook post. But it’s important to periodically stop to appreciate the meaningful relationships in your life.
“The things that matter most to people aren’t things; they’re other people,” Byock says. “Ask somebody who’s facing cancer or chemotherapy for the third or fourth time what matters, and the answer they give will always include the names of people they love.”
2. Make Time for Loved Ones
Your schedule may make it difficult to see friends or relatives as often as you’d like, but you can change that. Giving priority to your most important relationships should make you feel less frazzled and more grounded.
“There is not a single seriously ill patient I know that worries about all the current items populating their calendar when they receive a life-threatening diagnosis — their thoughts go immediately to their time with those they love,” says Dr. Cory Ingram, a palliative-care physician at the Mayo Clinic in Rochester, Minn. “There are some things in life to postpone; however, relationships with those who matter aren’t on that list.”
3. Have Meaningful Conversations
Most people don’t apologize, seek forgiveness, offer gratitude or extend feelings of love to their closest friends and family members on a regular basis. They may believe that their feelings are tacitly understood by their loved ones. Or they may feel that the topics are too significant to broach in everyday conversation, so they keep their feelings inside.
But putting words to your feelings can boost your relationships significantly. It’s particularly important for parents who may not have shared their thoughts with their children — especially adult children.
“It’s worth taking the time to sit with each of your children and let them know how proud you are to be their mom or dad,” Byock says. “[Or tell them] ‘I love you more than I can say.’ Who else on this planet can give that gift in your voice? I’ve counseled many children who were crying after the death of a parent, who never heard words of that nature. Some of those children were in their 60s.”
4. Don’t Hesitate to Share Deep Feelings
In many families, people don’t discuss emotions unless there’s a crisis, but you can work to change that. Consider how you’d feel if you or a loved one died suddenly, before you had the chance to share what was in your heart. Revealing your feelings can help to alleviate that sentiment and bring you closer.
“Some people say, ‘My kids know that I love them,’” Byock says. “’I say, ‘Great! Then it will be easy for you to say it.’ No excuses and no mumbling.”
It can be particularly difficult for some men to talk about their feelings, especially if they’ve maintained a gruff, stoic reputation. But once they open up, their words can deeply move the people in their lives.
“Most of them aren’t so tough — they just learned to cloak their feelings in a hard shell,” Byock says. “We guys aren’t as verbal about our emotions. We have emotions. We just don’t talk about them. Talking about this stuff can be very impactful.”
5. Prepare for the Worst
Many terminally ill people create advance directives, which are documents that name a loved one to make medical decisions on their behalf in case they are ever unable to speak for themselves.
But two-thirds of healthy people don’t have advance directives, perhaps because it requires them to consider their own mortality. Advance directives are invaluable for everyone, however, since we never know what may happen.
“It’s a way of taking care of your family,” Byock says. “I have an advance directive. Not because I have a serious illness, but because I have a family. I’m a dad, and if I’m in a car accident or have a stroke, if my wife and daughters would struggle, I can give one of them clear authority to speak for me, with no ambiguity. I can give them some sense of what I think I want, to lift a little bit off their shoulders.”
After you designate someone to speak on your behalf, let them know.
“Completing the document is only part of the requirement,” Ingram says. “The real work of completing an advance directive is having a conversation about your values, preferences and priorities for health care with those you named.”
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