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End-of-Life Planning

6 Mistakes to Avoid When Doing Your End-of-Life Planning

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Even when advance directives have been put in writing there are several reasons why patients may still not receive the care they have requested. Here are six common mistakes for you to avoid when doing your own end-of-life planning:

by Karen Wyatt MD

(Previously posted on HuffPost)

A recent review article has shown that patients who have planned in advance for the end of their lives spend less time in the hospital, receive fewer intensive treatments, and have greater quality of life when they reach their final days. In addition, their surviving relatives experience less stress, anxiety and depression during the process.

These findings from studies that have been conducted over several years at multiple sites present a compelling argument for planning ahead for the end-of-life and completing advance directives. Yet recent statistics show that only 20-30 percent of Americans have actually put their healthcare wishes in writing in the form of a living will or other legal document, so as a nation we are vastly unprepared for the end-of-life.

To make matters worse, even when advance directives have been put in writing there are several reasons why patients may still not receive the care they have requested. Here are six common mistakes for you to avoid when doing your own end-of-life planning:

1. Putting it off for a later time

According to a survey conducted by The Conversation Project, some respondents say they have delayed completion of advance directives because it’s too early to think about it or they’re not sick yet. But evidence shows that making choices for end-of-life care is more difficult during a crisis situation. In addition, some preferences, such as avoiding CPR, may not be possible if they are not in writing before an emergency occurs.

The best time to do advance care planning is right now, as soon as the thought occurs to you. Then you will have your choices in writing no matter what happens, since life has its own set of uncertainties. The wishes you express now can always be updated whenever your health status or your preferences change.

2. Choosing the wrong healthcare proxy

Naming a person to make health care decisions for you in case you cannot speak for yourself is one of the most important steps in the process of advance care planning. But it is essential to choose the right person for this responsibility. Remember that some friends and family members may be too overwhelmed with their own grief or guilt to advocate for your wishes as you reach the end of your life.

You should choose as your proxy someone you trust who is emotionally strong enough to stand up to pressure from the medical system or loved ones in order to protect your wishes. This person also should either agree with your choices or be supportive of your right to choose in order to advocate for you. Finally you should consider whether or not the person is both willing and able to represent you now and in the future.

3. Getting lost in the details

When planning ahead for future health care decisions, it quickly becomes obvious that there are millions of potential scenarios that could play out at the end of your life. You could spend months considering every possible circumstance and making decisions for each situation, but that would be an unfortunate waste of your time.

Instead of getting lost in all the possible details for the future, ask yourself simple ‘big picture’ questions like “What do I want it to be like when I die?” By starting at the end, you can work backwards and other decisions will become more apparent. For example, if you wish to be in your own home when you die, then you will want to avoid types of treatment that would require hospitalization during your final days.

4. Not discussing your plans with your doctor

A large study found that even when patients had taken the time to complete advance directives only 25 percent of their physicians knew that the documents were on file. Your health care wishes are not likely to be carried out if your doctor doesn’t know what they are and cannot access your paperwork.

Schedule an appointment with your treating physician to talk about your end-of-life preferences and to ask for input. This will ensure that three factors of effective end-of-life planning are met: you will have the information you need about your health status in order to make decisions, your doctor will know what you want and will also know where your directives are stored.

5. Not expressing your wishes to your loved ones 

The survey conducted by The Conversation Project showed that while 90 percent of Americans believe it is important to discuss their end-of-life wishes with their loved ones, less than 30 percent have actually had these conversations. This lack of information can cause distress and anxiety for family members at the time of a loved one’s death as they are forced to make difficult decisions without having a basis for them. Also many families have been disrupted at the time of a loved one’s death because members have been told different things at different times by the patient. 

Plan a time to talk to all significant members of your inner circle about the healthcare decisions you have made, preferably at one time so that everyone hears the same information. Also give a copy of your advance directive to each person and make sure they understand what it says and why you’ve made that decision. 

6. Not updating your end-of-life preferences over time

Everything changes in life and your choices are also likely to change as you grow older and encounter new health challenges. It is important to regularly revisit the end-of-life plans you made in the past in order to ensure that they are still the right fit for your current situation.
Consider reviewing your advance directives at least every 5 years while you are younger and still healthy. You should update your documents whenever you experience a change in your health status and then review them annually from that point on. 

The evidence seems clear that if you do complete your advance directives and avoid these six common mistakes you are more likely to have a peaceful end-of-life experience that honors your preferences. The time you spend now to do this planning and in the future to stay up-to-date will be worth it when you can meet your last days surrounded by love and content with a life well-lived.

As you consider your wishes for the end-of-life you might seek out guidance from books, articles or online sources to help you complete your advance directives. There are numerous options available including a free 10-day challenge you can sign up for to get all of your paperwork done with support and encouragement by email.

Remember to start your planning right away, make your best choices based on what you know right now, stop worrying, and spend your time loving the people in your life!

The Minimalist Approach to the End of Life

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Learn how a new lifestyle trend can revolutionize the way we approach our last days.

In recent years the minimalist lifestyle has been trending throughout the United States, particularly among the millennial generation. Unlike their parents who sought after material goods and wealth as part of “living the dream,” many younger people are choosing to live a simple lifestyle with fewer possessions, tiny homes, and less waste and consumption.

According to author Joshua Becker: “Minimalism slows down life and frees us from this modern hysteria to live faster. It finds freedom to disengage. It seeks to keep only the essentials. It seeks to remove the frivolous and keep the significant. And in doing so, it values the intentional endeavors that add value to life.”

While minimalism provides a more relaxed and meaningful way of life to its youthful followers, this movement could also be an answer to today’s current healthcare crisis surrounding the end of life. With an emphasis on simplicity and intentionality, the guiding principles of minimalism provide a framework for changing our approach to the later years of life and the process of dying and death. Here are some of those principles and how they might be applied to decision-making at the end of life:

Less is more

The current default mentality of our healthcare system seems to be “if some is good, then more is better.” A patient arriving in an emergency room anywhere in the country in the midst of a cardiac arrest will receive full-bore, defibrillated, intubated, catheterized, crash-cart care unless an advance directive and/or a healthcare proxy is available in the moment to refuse that care. And a cancer patient is likely to be offered treatment up until the last breath is taken, even when there has been no improvement from that treatment.

In this medical system more care will almost always be offered and carried out unless patients and their representatives are able to say “no” to that care. The patient’s best defense is to adopt the “less is more” mindset of minimalism and recognize that in many situations more care creates more side effects, more expense, more suffering, and more stress on patient and family.

Opting for less care can create space and time for enjoying moments with loved ones, contemplating what really matters in life and savoring the small pleasures that bring joy and meaning to existence. Less care can mean more quality of life if you approach it with intentionality and informed decision-making.

To be a “minimalist healthcare consumer” you must have an advance directive that spells out your wish for less rather than more care. You must communicate this desire to your medical providers, your healthcare proxy and your loved ones.

But you also have to address your fear of suffering, aging, illness and death, because those fears can drive you to choose more care when faced with a crisis. Complete your paperwork but also do your inner work to confront your deep-seated and normal anxieties about the end of life so that you will be ready to face the natural passage from life to death. You should also practice the “less is more” mindset during your later years by making careful decisions about the non-emergent healthcare you receive from your provider during routine office visits.

Eliminate the non-essential

Throughout your later years as you seek out medical care keep asking: “Is this essential?” Question every treatment or diagnostic test that is recommended to you and demand to know why it is necessary, how it might benefit you, and what could happen if you don’t do it. Don’t accept a procedure or test until you have had time to do your own research or get a second opinion. Some standard recommendations that have been accepted in the past such as the annual physical exam and routine screening procedures are now being questioned as they have been shown to result in over-diagnosis and excessive treatment.

If you take prescription medications ask if they are still necessary and if you can systematically discontinue some of them to see if they are helping or worsening your symptoms. Studies show that seniors who take multiple medications are more likely to experience negative side effects and even unnecessary death from the combination of potent drugs.

Find a primary care medical provider who agrees with your “less is more” philosophy and will help you create a sensible and simple plan for managing your healthcare needs. Don’t seek out specialty care unless your primary care provider says it is necessary. You have a right to say “no” to medical care and to find a practitioner who supports your right.

Individualism

While minimalism may be a trendy lifestyle with many people following the same guidelines, its principles encourage each person to find their own path to simplicity. As you begin to advocate for your individual philosophy of less medical care in later life it’s important to know yourself and seek out what is best for you.

Spend time thinking about the experiences of aging and dying that you may have witnessed with loved ones in the past. What would you like to be different in your end of life? How can you create a better path for yourself that reflects your unique wishes and desires?

For example, if you are a solitary person and prefer to live alone for as long possible then you will need family or community support to make sure you can safely stay in your own home as you age. If you enjoy social interactions with others you might choose to be in a senior living center in the future and you will need to provide for that option financially.

Get organized

One hallmark of minimalism is “keeping everything in its place.” This principle applies especially to your plans and paperwork for the end of life. Complete your estate plan, will, and advance directives and make sure those documents have been shared with the appropriate professionals and loved ones.

Decide what type of “less is more” funeral and burial or cremation you would like to have, perhaps a simple home funeral and green burial, and put those preferences in writing too. Keep your paperwork organized and accessible, including insurance forms, birth and marriage certificates, military discharge papers, titles, deeds, banking and investment information, online accounts and passwords, and medical records.

Live in the moment

A benefit of the minimalist approach is the ability to live lightly and with fewer burdens from the past and worries about the future. When you can live more fully in the present moment you are free to take in the small joys and pleasures that are available to you, like the beauty of a sunset, a bird singing outside your window, or the comforting aroma of dinner cooking on the stove.

However, living in the present moment takes work. You have to consciously let go of the past by giving away things you no longer need and making room for a new way of life. This applies to medical care at the end of life too—perhaps you will decide to discontinue treatments or procedures that have been part of your routine for a long time. Or you might part ways with a medical provider who doesn’t support your choice of a minimalist approach to the end of life.

As part of the medically minimalist lifestyle you will need to adjust to the normal changes of aging and learn to embrace them rather than seeking a medical solution to every ache and pain. Find modalities such as yoga, massage, relaxation, and imagery that can keep you comfortable without taking additional drugs. You may find that you receive positive “side benefits” from these practices rather than the negative side effects of many medications.

Prioritize what really matters to you

As Joshua Becker stated above, minimalism focuses on letting go of what is superficial and keeping those things in life that are significant. You have to determine what really matters to you in order to choose the components of your new less-is-more lifestyle.

This prioritization applies particularly to the non-tangible things like your relationships with loved ones and the time you spend with them. Would you prefer to stay in the community where you have lived for many years? Or would you consider moving to be closer to family as you age? These choices will play an important role as you let go of the complexities of the past and move toward a simpler way of life in the future.

No matter how old you are it’s never too early to start thinking about what is most important to you in life and making those things a priority. When you give your time and energy to the deeper and more significant aspects of life you will find it much easier to let go of all the things that don’t really matter to you.

Find Your Purpose

The key to successfully maintaining a minimalist lifestyle is recognizing that life has a greater purpose than just the accumulation of material possessions. When you know your own purpose you can make choices that support that purpose rather than interfere with it.

The healthcare decisions you make for yourself are important because your time, energy and finances can potentially be drained in later life if you pursue unlimited medical interventions in a quest to reverse aging and prevent death at all costs. The minimalist approach reminds us that the purpose of life is not to live as long as possible, regardless of the circumstances, but to live a life of meaning and quality for as many days as we can. Again, the emphasis is on the meaning and quality of life rather than on the quantity; another example of “less is more.”

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While minimalism as a lifestyle may not suit everyone, it is certainly worthwhile to apply some of these minimalist principles to the later years of life as we contemplate how to make the most of our last days. As a general rule if we focus on what is simple and has the greatest meaning for us we will be guided to make wise choices for the end of life that reduce stress, wastefulness and suffering from unwanted medical care.

You can start your minimalist approach right now no matter what situation exists for you right now. Think of one thing in your life that you no longer need and let go of it today; then repeat that process each day from now on. The more you practice living simply the easier it becomes as you free yourself from old burdens. Perhaps when you reach the end of your days you will arrive unencumbered, free to move on through the final passage with lightness and ease—that at least is the hope for all of us.

How Reading About Death Can Change Your Life

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A new reading group about death, dying and the afterlife intends to increase death awareness across the country.

(Note: This post previously appeared on Medium.com)

For more than a century modern society has been intentionally oblivious to the reality of death. Once dying and death were removed from the home and every-day life by the increased availability of hospitals and funeral homes, it was relatively easy to shove death out of awareness and make it a taboo subject. There was even a belief for a time that thinking about death was pathological and destructive.

But now we know that death awareness—including thinking and reading about death—has positive benefits, thanks to research that has been done in recent years. An article by Kenneth Vail and colleagues from the University of Missouri includes a review of multiple studies on the impact of becoming aware of death and the findings are impressive:

Death awareness leads to increased helping behaviors.

People who had recently been reminded of death were more likely to help a stranger in need. In fact, increased death awareness correlated with an increase in positive factors like compassion, tolerance, and empathy. When we understand that life is fleeting we tend to focus more on the things that really matter, which includes the wellbeing of others for many of us.

Those aware of death are more likely to care about the environment.

Again the understanding that life is fragile can lead us to care more about all of life, including the natural life that surrounds us and the life of our planet as well. Those who do not deny that death is part of the cycle of life are more inclined to be careful with that life in all its forms

Death awareness corresponds with compassion toward those from other groups.

Studies have shown that members of certain fundamentalist religious groups who experienced an increase in death awareness were more likely to exhibit compassion and tolerance toward those of other religions. Peace becomes a more valued commodity when we recognize that our lives have a limited time frame.

Awareness of death leads to healthier behaviors.

It may seem obvious but studies have validated that people who are aware of their mortality tend to make better choices for their overall health. Quitting smoking, increasing exercise, doing breast self-exams, and even using sunscreens are all behavior changes that have been linked to death awareness. We cherish life more when we know if won’t last forever.

The results of these studies show us that our entire society can benefit from getting out of denial and becoming more openly aware of death. In fact, it appears from this information that many of the problems that currently afflict humankind could be alleviated with better awareness of and education about death.

One of the ways to increase death awareness is through reading books that provide factual information about all aspects of the end of life. In addition inspiring stories about the end of life can help us see beyond our fears and get comfortable with the reality of death. Books have the capacity to take us outside our usual experience and expose us to new ideas that stretch our boundaries.

In addition, by reading the stories of others who are coping with mortality we learn that all of us face the same struggles as humans here on planet Earth. The challenges we share are far greater than the differences that exist between us.

 “You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.” – James Baldwin

By reading books about death and dying we can increase our own death-awareness and prepare ourselves to be a source of information and inspiration for others.

To foster this type of positive growth through reading a unique new reading group called “A Year of Reading Dangerously” has been created for 2018. The group will explore death, dying and the afterlife by reading one book on these subjects each month during the year and holding online discussions about each book.

You can join more than 700 people around the world who are all learning about death together by signing up here. You have much to gain by reading about death … in fact, it will change your life!

 

Why Some People Don’t Die in Peace

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(Previously published in the Huffington Post)

Throughout my career as a doctor working with patients in hospitals, nursing homes and hospices I have had the opportunity to witness the dying process on many occasions. I have learned that even though the outcome of this process is always the same—the death of the physical body—there are many different ways to die.

In fact, each individual has a unique experience at the end of life. For some patients death is a welcome ending to a life well-lived, for others death is reluctantly accepted even though they don’t feel ready to let go of life, and some approach death kicking and screaming all the way. They “rage against the dying of the light” as observed by poet Dylan Thomas in a poem he wrote for his dying father.

Though I have seen that patients receiving hospice care often die with greater comfort than those in the hospital, there are still people who struggle all the way to their last breath, even when they are surrounded by loved ones at home. What makes the difference? Why are some people not able to be at peace when they die? Here are some of my observations from years of hospice work and my recommendations for ensuring that you have a peaceful death:

They haven’t thought about the end of life

We live in a society where death is still a taboo subject. Many people go through life without consciously considering the fact that they will die one day and are shocked when they receive the news that death is approaching. Since they’ve never thought about death they have no idea what type of care they would like to receive at the end of life and find it difficult to make clear choices for themselves while dealing with the stress and fear caused by a terminal diagnosis.

Recommendation #1: Begin to think about the reality that every living thing on this planet eventually dies and then spend time contemplating the fact that you too will die one day. The Bhutanese people have a practice of thinking about death 5 times a day and have been named “the happiest people” on earth. So make a point of thinking of death on a regular basis, perhaps reading books and watching films to help you get more comfortable with the idea of death.

They haven’t put their wishes in writing

Those who haven’t thought about death also have not made plans for the end of life or completed an advance directive. A recent study has shown that two out of three Americans have NOT put their end-of-life wishes in writing, which means they are more likely to receive expensive and unwanted care during their last days. According to a survey by the CDC, most patients do not want to die in a hospital attached to machines, but that is only possible if they have made the decision ahead of time and completed an advance directive.

Recommendation #2: Start by completing your own paperwork now for the end of life, such as a living will, estate plan, and funeral plan. Think through the options for care that might be available to you and formulate your own opinions—what is important to you? What are your wishes for your last days on earth?

They haven’t talked to their loved ones about their preferences

During a healthcare crisis many patients are unable to speak up for themselves about their end-of-life choices. If family members don’t know the patient’s wishes they will find it difficult to make appropriate decisions for their loved one on a moment’s notice. In my experience, uninformed family members are more likely to defer to medical providers when end-of-life decisions must be made and are also likely to experience guilt and conflict with one another over those decisions.

Recommendation #3: Once you’ve decided what you want for yourself at the end of life it is vitally important that you have conversations with everyone in your life that may be involved in making decisions for you. The more you talk about it the more you will create peace for yourself and for your loved ones when the time comes.

They have been unhappy all their lives

There is a saying in hospice that

people die the way they’ve lived.

I have observed that patients who have held onto bitterness and disappointment about life tend to be unhappy during the dying process as well. Since they had never learned how to be at peace with the circumstances of life, when death is near they remain angry and inconsolable. Woody Allen wrote for the movie Annie Hall that life is “full of loneliness, and misery, and suffering, and unhappiness, and it’s all over much too quickly.” This epitomizes the attitude of the unhappy patient at the end of life, who hated every moment of being alive but is now furious that it is coming to an end.

Recommendation #4: The antidote to this type of misery is to learn to find happiness within yourself long before life reaches its end. Each of us is responsible for creating our own joy in life, even if life hasn’t turned out as we have hoped. Conduct your own “experiment” and figure out what makes you happy—then cultivate those things in your daily life and you will look back one day to find that you have led a life filled with joy.

They are holding on to old regrets and resentments

Many of my dying patients have been ravaged by feelings of guilt and remorse over events of the past. They either have felt a deep need to make amends for some previous action of their own or they have been burning inside with resentment toward another person. Those who have not found their way to forgiveness have remained in this painful state of guilt and blame until their last breath.

Recommendation #5: It is never too early to start working on letting go of old wounds so that you can avoid the overwhelming negativity of resentment at the end of life. Develop your own daily practice of forgiveness and you will find much more peace in your life now, as well as during your last days.

They feel entitled to a different outcome

Some of my patients have been angry about the fact that they were dying because they spent much of their lives doing things they believed would “prevent” them from dying. They devoted themselves to a restrictive diet or intense workout plan or even strict religious practices in order to live life “the right way” and avoid something “bad” from happening to them. When they ultimately had to face the fact that they were going to die anyway they felt cheated and betrayed. They had fallen for a false belief that their healthy habits would somehow entitle them to avoid death.

Recommendation #6: It is important to come to terms with death, and your fear of it, earlier in life so that you don’t waste time and energy trying to prevent what is inevitable. Develop a practice of thinking about death as a necessary part of the life cycle and something not to be feared, but to be respected. Journaling, prayer and meditation can be helpful tools as long as they focus on the reality of death and are not serving as bargaining chips in a futile attempt to avoid death.

They rely on the medical system to make choices for them

Those patients who have avoided thinking about death generally have also not taken time to educate themselves about their own health issues. Without knowledge and information as a tool to guide decisions, they are disempowered when they must engage with the medical system. They don’t know what questions to ask or what alternatives to explore so they simply place all decision-making in the hands of their care providers. These patients may end up with more treatment than they want and encounter more suffering than necessary because they didn’t have the confidence and information they needed to help determine their own course.

Recommendation #7: While doctors are well-educated about disease and treatment modalities, they know very little about you, your life path and what options might be best for you. When you receive a chronic or terminal diagnosis it is your responsibility to learn as much as you can about your options by asking questions, reading and studying, and requesting second opinions. You are the only expert on the subject of “you” so don’t give up your power to another person, no matter how impressed you are with their credentials.

In summary, by looking at why some people don’t die in peace we have seen what is necessary in order to have a peaceful death. Being consciously aware of your mortality, working on your past issues, making plans and completing paperwork for the end of life, communicating with loved ones, and empowering yourself with knowledge are all important steps toward an end of life that offers comfort rather than chaos. But it requires work and dedication on your part to prepare now for what will be coming in the future.

Of course there are other reasons why some people don’t die in peace: they may have pain and other symptoms that haven’t been managed well, they may be alone and have no one to comfort them, they may simply be overwhelmed by the hand that life has dealt to them. But these are issues that may be addressed by finding support from hospice or palliative care workers, if that type of care is available (and reliable) in the community, though there are reports that hospice staffs are stretched too thin in some areas and care at times falls short of what it should be.

But you can improve your own chances of getting good end-of-life care by doing your own inner work, becoming an advocate for hospice and palliative care in your community, holding those organizations accountable to best-practice standards, and supporting causes that help people find peace in their lives. It’s never too early to start!

5 Questions to Ask Before Naming A Healthcare Proxy

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You may already know what kind of healthcare you would like to receive when you reach the later years of your life. But, to ensure that your future healthcare wishes are followed, one of the most important steps you can take is to name someone you know as your “healthcare proxy.” This person will speak for you if you are unable to communicate and will make sure your medical providers know your preferences.

This crucial role shouldn’t be entrusted to just anyone, so it’s wise to make a careful decision. After all, your oldest child or nearest relative may not be the best person for the task, even if that person seems like a logical choice. Write down the names of several people you are considering for your healthcare proxy and then ask these 5 questions about each of them:

1. Does she understand my healthcare wishes?

A recent study at Yale University showed that only about 20% of the healthcare surrogates they interviewed accurately understood the wishes of the patient they represented. To speak on your behalf your proxy must have a very clear grasp of your preferences. Pick someone who not only comprehends what you have chosen, but who also recognizes why you have made your choices.

2. Does he agree with my wishes?

Ideally your proxy should be in agreement with your decisions and have no concerns about them in order to advocate for you. Some people may be able to support your wishes even if they don’t agree with them, but you need to be certain that your feelings will take priority in any situation that may arise.

3. Will this person be available to speak for me in an emergency?

Your healthcare proxy may need to travel to the hospital on short notice at inconvenient times to speak on your behalf. The person you choose for this role should be someone who is flexible and cares enough to go out of the way for you.

4. Is he or she emotionally strong enough to make a decision in a crisis situation?

The person you choose may have to make difficult decisions for you on the spur of the moment. Make sure your proxy will not allow their own grief feelings to interfere with acting on your behalf. They may also have to stand up for you if family members and medical professionals disagree with your choices so choose someone who can handle those challenging situations.

5. Do you trust this person?

Your own “gut feeling” is important to assess when you consider your choice for healthcare proxy. Make sure you trust this person completely since you may be putting your own future in his or her hands. If something doesn’t “feel” right to you about this person, spend some time thinking of someone else who is a better fit.

No matter who you end up choosing to be your healthcare proxy, that person needs to understand the requirements of this important role. Schedule time for a long conversation and bring along your wishes in writing. Be prepared to answer any questions that arise and suggest a follow-up discussion if needed. You might want to download and print this helpful handout: Guidelines for a Healthcare Proxy.

Your next steps are to put your wishes and the name of your healthcare proxy into writing by completing the appropriate advance directive (or living will) forms for your state of residence. Then share them with your family, friends, clergy and healthcare providers. Congratulations on taking the time now to protect your future wellbeing and increase your peace of mind.

 

About the Author:

Dr. Karen Wyatt is a hospice and family physician who writes extensively on spirituality and medicine, especially at the end-of-life. She is the host of End-of-Life University Interview Series and author of “The Tao of Death” and the award-winning book “What Really Matters: 7 Lessons for Living from the Stories of the Dying” Connect with her at karenwyattmd.com, on Facebook at fb.com/KarenWyattMD and on Twitter @spiritualmd