Archive for category: End of Life

Like a soldier going into battle for the first time, being my mother’s caregiver for the final nine years of her life was a baptism by fire for me. My mother and I learned so much useful information through those years that she made me promise I would write a book about what we learned. I was so gratified when someone told me that Making Peace with Death and Dying it should be a reference book in every home.  Here are the top five things I learned about dealing with death:

1. Don’t assume you are supposed to know what to do.

We live in a death-denying culture that has a hard time even saying the word “death.” We are not taught how to face our own death or that of a loved one. It is therefore no surprise that many of us panic in death’s presence. At the very least, it is common to be ill at ease. We don’t know what to do or not do.

So, remember it is normal to be ill-prepared to face death – your own or that of a loved one. Recognize this state of affairs. Don’t pressure yourself to “do it right.” When someone you love is dying, it’s okay to be a mess. Just try not to dump your mess on others — especially the one who is dying.

No two people are going to respond the same way to a death. Most will be woefully unprepared and unskilled at dealing with the situation. This will not, however, stop some from shirking their responsibility or being self-appointed bullies demanding that others follow their lead.

The best approach is to lead with your heart. Keep your love flowing with the dying person and others as well — if possible. Nothing is more important than loving each other. Do your best and then some.

2. Make it a priority to demonstrate your love for the person who is dying. 
The fact that your loved one is dying can be overwhelming and scary. Do your best not to let that get in the way of keeping your love alive. You are there to see them off on their journey into the unknown territory of death. Love them up, down and sideways, but don’t make a big deal about it. Just let your love flow and watch for little things that you can do to be of service to them.

Accept the reality if a loved one is dying. Don’t try to deny it by saying things like, “Your color looks good today” when you both know he or she is dying. That’s like saying “I can’t handle this and need to pretend it isn’t happening.” Be honest. Be authentic. Be you. It’s okay to let them see your fear and distress, but don’t let that overshadow your love.

Express your gratitude to the dying person for the ways they enriched your life. Share happy memories and yes, do say goodbye — but do it tenderly. Don’t be afraid to touch the dying. Nothing communicates our love more than a loving touch. Hold their hand. Stroke their hair.

Tailor your efforts according to the time available. Respect the fact that time can be very short from hearing the prognosis to the actual time of death. One of my personal pet peeves is when people are inconvenienced by the news of a loved one’s impending death. They act as though their loved one should have checked on their availability rather than having the audacity to sound the red alert at an inopportune moment. When your mother has a 50/50 chance of making it through the night, you don’t show up four days later!

3. Respect the authority of the dying to make his or her own decisions.
The person who is dying is the boss. If they are conscious enough to be making their own decisions — don’t bully them into doing things your way. Just as sure as you are that your way is right for you, know that their way is right for them no matter how different it is from your own. If someone holding a healthcare proxy is in charge, respect his or her authority.

Ideally, each of us gets our ducks in a row before our dying time. In reality, most do not. As a result, a lot of financial, legal, physical, mental, emotional and spiritual life-or-death decisions get made in a hurry, at the last minute. This can cause a lot of chaos, confusion, conflict and mixed up emotions among family and loved ones. Do your best to quickly align yourself with the wishes of the dying. It is their death, not yours.

4. Accept that he or she is dying. Don’t fight against it.
It’s fine to hope that things will turn around and death will be postponed. However, if death is what is happening, it helps enormously to accept that fact. We are taught to fight against death like it is an evil monster. In fact, death is as normal as birth — we just haven’t been trained to see it that way. I find it sad when doctors and loved ones subject the dying to endless invasive drugs, tests and procedures when it is obvious that it is time to die. I am an enthusiastic supporter of hospice care for the dying.

Each of us is born one moment of one day, we die one moment of another day and have an unknown number of days to live in between.

Make the most of the time you and your loved one have left together. Fill it with tenderness and be of loving service to their wishes and needs. Give them a good send off.

5. Contribute to maintaining a peaceful environment.
When someone is dying, they have enough to do handling their own process. They might be dealing with physical pain, fear, emotional turmoil, confusion, regrets, etc. Assume that any discord in their environment will add to their load and be unkind on the part of those causing it.

Even if the dying person is seemingly unconscious, assume he or she can hear and be affected by everything that happens around them.

If family members are squabbling, take it outside of the room. Consider the dying room a sacred space where only love and comforting activities are allowed unless the dying person requests otherwise.

Give your loved one the best send off possible leaving no regrets.

If you would like to know more about me and my work, please explore my website here.

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Families can be complicated, to say the least. When they are beautifully loving and caring, it’s one of God’s most delightful gifts. But often, when the well-being of a critically-ill loved one is involved, tensions can flare. We don’t all love in the same way. And, love is often tainted by self-serving motivations or competition for power and influence in decision-making.

In fact, terrible things can be done in the name of love. And, the dynamics of power and influence that can develop among family and loved ones can be shocking. Tensions can escalate as judgments and discord fester. Frequently, childhood politics surface and you suddenly find yourself the seven-year-old kid who used to be bullied by her older sister.

Everyone might sincerely believe they all have the patient’s best interest in mind. Yet, they may have diametrically opposed views about what that would look like and how it is to be accomplished. Unfortunately, all too often family members polarize against each other behind the scenes rather than uniting in support of the patient.

Here are some guidelines to help families navigate these stressful and emotionally challenging times.

Respect the patient’s right to make his or her own decisions as long as deemed mentally competent.

Recently, a client shared her family’s drama around their terminally-ill mother. Behind the scenes, some family members are under the impression that mother is depressed and needs antidepressants. They emailed her doctor urging him to prescribe them. Others are concerned about drug interactions and over-drugging mom. They worry about masking feelings that she needs the opportunity to process. When I asked what the mother wanted, my client didn’t know. No one had asked her. They were too busy campaigning for their point of view behind her back.

Be sure that the patient designates a healthcare proxy before being deemed mentally incompetent.

The person who is appointed as the patient’s healthcare proxy is charged with the responsibility to make all decisions on his or her behalf regarding healthcare.

A client told me that her father was the healthcare proxy for her mother. However, he was terribly uncomfortable dealing with death and dying.

The choice of who to appoint should not be primarily governed by the person’s rank in the family pecking order. Rather, the patient should thoughtfully decide based upon who is most able to communicate comfortably with the patient about their needs and care. It should be someone ablle to advocate for the patient with doctors, nurses and caregivers. For example, a family member might hold a strong personal or religious belief that is quite different from that of the patient. This could prevent that individual from following the patient’s wishes. Therefore, they would not be a good choice to serve as healthcare proxy.

No matter how strong your opinion, that doesn’t make you an expert.

As a family member, you may have concerns about the treatment protocol and care being given to your loved one. Address it either with the patient and/or their healthcare proxy. Do not take it upon yourself to try to direct their care. Feel free to express your point of view, but respect the right of the person who is making the decisions. Be careful not to make others wrong for not agreeing with you.

Clarify, agree upon, and respect a pecking order for the flow of information and influence.

The role of the primary caregiver and/or healthcare proxy should be respected. They typically have the most up-to-date knowledge about the patient’s condition and needs. If you really want to demonstrate your love for the patient, than do everything you can to support this person. Offer your help. Be a team player. Help to keep communications clean and above board within the family.

Avoid the temptation to judge and talk about each other behind backs. If you have a problem, address it directly with the person(s) involved.

Having a loved one who is critically-ill is stressful enough. Do not make matters worse by bringing your personal animosity toward another family member into the situation.

Handle your emotional needs on your own. Don’t act them out around the patient.

It is important to be ruthlessly honest with yourself about how you feel and to deal with that within yourself. Be respectful of the patient’s needs and the normal routine that has been established for the patient’s care.

It is not uncommon for relatives who live at a distance to visit and try to overcompensate for their absence. They may be acting out of guilty feelings by playing the hero or trying to make a larger-than-life impact on the situation.

For example, don’t take it upon yourself to feed the patient two big bowls of oatmeal because that used to be his or her favorite breakfast. Find out what the patient is eating now and stay with that. Also, consider the possibility that if you did manage to feed him or her that much oatmeal it wouldn’t necessarily mean that it was a good idea. They may be fully aware of your need to feel helpful and be eating it to please you even though it will cause digestive distress later.

In most cases, an in-law should focus on supporting their spouse in handling the emotions, tensions and concerns regarding the situation. It is usually not their place to be a major player in decision-making.

There are exceptions. For example, an in-law may be the primary caregiver and/or supervising the day-to-day care of the patient. Then his or her knowledge of the patient’s needs should be highly regarded.

Visitors should always seek the primary caregiver’s guidance about what is in the best interest of the patient. This is especially important if the patient is living in the home or in a nearby facility while other family members are not local to the situation.

Remember that you are writing family history through your behavior. Consider giving the patient a wonderful experience of loving, united family support.

 

If you would like to know more about me and my work, please explore my website here.

Do you know someone who might benefit from reading this article?If so, please share it with them. 

While I am not a Buddhist, I find great wisdom and potential liberation in the Tibetan Buddhist teachings on death. They offer a beautiful understanding of life’s end to those in the west who are still under the influence of a societal death taboo.

Sogyal Rinpoche, author of The Tibetan Book of Living and Dying, has a particular skill in drawing out the universal messages of these teachings. He makes them understandable to the western mind without losing their authenticity, purity, and power. What follows is a summary of his teachings on death and impermanence.*

According to Sogyal Rinpoche, reflections on death and impermanence are the very cornerstone of all spiritual paths. Among Christian contemplatives, for example, is the expression ‘Memento mori’ – ‘remember that you will die.’ Buddhist teachings encourage awareness of the fact that we could die at any moment. This helps us to maintain awareness of the preciousness of life and encourages us to sort out our priorities.

From a Buddhist perspective, the root cause of all our suffering, is the fact that we do not take enough time to come to know ourselves. We are encouraged to discover our true nature, our enlightened, ‘Buddha’ mind through prayer and meditation.

Beyond our ordinary everyday mind is our true mind. It radiates the qualities of tremendous light or brilliance (wisdom) and great warmth (love and compassion).  Sogyal Rinpoche uses the analogy of the sky to contrast this state of enlightenment to our everyday mind. Our daily thoughts, feelings, and actions are like temporary clouds that come and go in an endless sky. The sky, like the enlightened mind, is beyond birth and death.

Coming to know our true nature requires overcoming our ordinary mind and moving past our ego.

In our day-to-day lives, we become absorbed and distracted by our thoughts, feelings and activities. It is easy to allow our ignorance, negative emotions, and actions to obscure our true nature. This occurs much the same way that clouds block our awareness of the endless sky.

We all have the potential to connect beyond our ordinary minds to our deeper state of profound wisdom, love, and compassion.

It is this state of mind that is said to endure past death.  If we do not come to glimpse our true nature in life, we will not be prepared to recognize it and enter into it at death.

This transformation of mind is essential preparation for death. Like cleaning the smudges off your eyeglass lenses, it also allows us to see more clearly in life. Our very perceptions transform and circumstances will appear differently. Whether or not we are able to see clearly, remember that even when our ordinary mind is cloudy, the sky-like nature of mind is still there. Weather is only on the surface. Deep in the sky-like nature of our minds it is pure.

In many western spiritual traditions, we use the expression ‘let go and let God.’   Similarly, the Buddhists teach that the essential path to personal transformation and freedom comes from learning to stop grasping after impermanence. Indeed, everything is in a constant state of change.

The message of impermanence is that one of the main causes of suffering is grasping and attachment.  Since what we grasp for is impermanent, grasping is an act of futility.

We have to learn to let go.  We don’t have to change. We simply change our minds and recognize that impermanence is the very nature and fabric of life itself.

We associate impermanence with losing and death, but when we really understand it  – it is the most secure thing.  When we lose the clouds, we gain the sky.

The most permanent thing is impermanence. When we realize that, we are made stronger spiritually.

Our fear of death, according to Sogyal Rinpoche, is the fear of life, of facing ourselves.  Looking into death is actually facing ourselves because sooner or later we have to come to terms with ourselves. That is why we tend to think of death only when we are dying.

To look at yourself and your life at death is too little too late where personal transformation is concerned.

That is why Tibetan Buddhist teachings stress that we should always contemplate death and impermanence. It is a way of breaking through to our true nature.

Rainer Maria Rilke said that our deepest fears are like dragons guarding our deepest treasure. Our fear of the impermanence of life and all that we grasp after awakens in us an awareness that nothing of this world is real and nothing lasts.

Milarepa, a revered Tibetan poet and sage, said it this way – “All worldly pursuits have but the one unavoidable end, which is sorrow: acquisitions end in dispersion; buildings in destruction; meetings in separation; births, in death. Knowing this, one should, from the very first, renounce acquisition and heaping up, and building, and meeting; and faithful to the commands of an eminent guru, set about realizing the Truth (which has no birth or death).”

We discover that this understanding about impermanence is really our greatest friend. It drives us to ask:

“If everything dies and changes, then what is really true?  Is there something behind the appearances?  Is there something boundless and infinitely spacious in which the dance of change and impermanence takes place?  Is there something, in fact, we can depend on that does survive what we call death?”

Allow these questions to occupy you urgently and reflect upon them. You will slowly find yourself making a profound shift in the way you view everything. With continued contemplation and practice in letting go, we come to uncover in ourselves something we cannot name or describe or conceptualize.  It is something we come to realize lies behind all the changes and deaths of the world.

Our myopic focus upon our desires, what we are grasping for, and that which we are trying to avoid, begins to dissolve and fall away. As this happens, we catch repeated and glowing glimpses of the vast implications behind the truth of impermanence.

Sogyal Rinpoche describes this transformation saying:

“It is as if all our lives we have been flying in an airplane through dark clouds and turbulence when suddenly the plane soars above these into the clear boundless skies.  Inspired and exhilarated by this new dimension of freedom, we come to uncover a depth of peace, joy and confidence in ourselves that fills us with wonder and gradually breeds in us  a certainty that there is in us something that nothing destroys, that nothing alters, and that cannot die.”

He further describes, “as the new awareness becomes vivid and almost unbroken, there occurs a personal and utterly non-conceptual revelation of what we are, why we are here, and how we should act which amounts in the end to nothing less than a new life, new birth – almost a resurrection . . . You discover something in yourself that does not die.”

He also speaks of death using the analogy of being on a train platform waiting for a train.  We know that we must take that train but don’t know when it is coming. We have great anxiety because our bags are not packed. We do not prepare for death or live thoughtfully because we think we will live forever. We know we will die someday. But, we prefer not to absorb that thought. Instead, we pretend that we have an unlimited lease on life.

We become lazy in how we live our lives.  The particular kind of laziness in the west is an active one. We do everything and anything to avoid ourselves. We fill our lives with so many activities that there is not really a chance for the truth of ourselves to be revealed. There is no gap. Yet, we live with an abiding anxiety since we have not faced ourselves or our death. There is a deep anxiety and a deep fear because death represents our ultimate fear.

Learning to live in the immediacy of death helps us to sort out our priorities and to realize what is truly important in life.

We learn that there is really not much time to waste. Death helps us to look into our life in a deeper way.

We come to realize that only two things really matter when we die – how we have lived and the state of our mind.

When we take care of those most important things, then we can relax. Milarepa said my religion is not to be ashamed of myself when I die.”

An unenlightened mind sees death as defeat – a tragedy.  These teachings show us it is really an extraordinary opportunity for transformation and personal liberation.

When we die, it is only the end of one cycle finishing. The delusions of this life will end if we allow it. However, those who hold tight to their illusions don’t allow for their liberation to take place. Those who allow it not only surrender to the death of their bodies but they allow their ordinary mind to die with all its delusions as well.

Milarepa described it this way: ‘In horror of death, I took to the mountains. Meditating again and again on the uncertainty of the hour of death, I captured the fortress of the deathless unending nature of mind. Now all fear of death is done and gone.”

Tibetan Buddhist teachings provide three pieces of advice for the moment of death. These also serve practitioners well in how to live their lives:

Let go of all graspings, attachments, and aversions.

Keep your heart and mind pure.

Unite your mind with the wisdom mind of the buddhas.

Those practicing these techniques in life who are really able to let go inside themselves, find they are able to cope better with outer stress. They are less bothered or worried by what transpires in their life. When we stabilize and integrate this view as part of our being through meditation and action, we can meet death fearlessly. By practicing getting into the high ground of our consciousness during life through meditation and contemplation, we prepare ourselves for the moment of death.

There is also advice given for those who are helping the dying. Essentially, we are called upon to simply be there maintaining a consciousness of unconditional loving — free of attachments. Love is not expressed by grasping after the life of the dying. This kind of attachment, Sogyal Rinpoche teaches, is actually what spoils love.

To truly realize love for one another, we have to let go.

When a loved one is dying, we can best serve them by giving them our permission and blessing to die and by surrounding them with our love and encouragement.

*This article is based on the teachings of Sogyal Rinpoche presented in The Tibetan Book of Living and Dying and the following four lectures: Transcending All Fear of Death; The Essence of The Tibetan Book of Living and Dying (parts one and two); and Reflecting on Death.

 

If you would like to know more about me and my work, please explore my website here.

Do you know someone who might benefit from reading this article?If so, please share it with them. 

Advance Healthcare Planning Part 2:
Why Filling Out Your Forms is Not Enough

In Part One of this article, I discussed why every mentally-competent individual over the age of 18 needs to have advance healthcare plans in place. Here we will look at the in’s and out’s of how to make sure your plans will be able to be put into effect when the time comes. To put the importance of Advance Healthcare Planning (AHP) into perspective, consider the following facts:

• Doctors are trained to preserve and save lives and for many it is difficult and sometimes considered a professional failure to broach the subject of death and referral to palliative care or Hospice services rather than to suggest yet another treatment with slim possibilities of helping the patient to recover.

• According to the Center for Disease Control the vast majority of Americans say they want to die at home, but 75% die in a hospital or nursing home.

• Almost 1/3 of Americans see 10 or more doctors in the last 6 months of their life, most dying in the ICU. (Source: Dartmouth Atlas of Healthcare, 2005)

• In 2009, Medicare paid $55 billion just for doctor and hospital bills for the last two months of patients’ lives. That’s more than the budget for the Department of Homeland Security or the Department of Education. It’s been estimated that 20-30% of these medical expenses may have had no meaningful impact. Most of these bills were paid by the Federal government with few or no questions asked. (Source: The Cost of Dying, 60 Minutes, 8/8/10)

As mentioned, most of us who have even filled out our Advance Healthcare Directives, are woefully in the dark about some very important aspects of how this all works. Basically, filling out the forms simply isn’t enough. That’s only one of five critically important things you have to do to ensure that whoever you appoint as your Healthcare Proxy will be able to speak competently on your behalf if, and when, you cannot speak for yourself. The five key things you need to do are:

1. Educate Yourself and Others: Before you fill out any forms, educate yourself about all the terms and nuances involved. Understand the purpose of each form as well as what it can and cannot do. Here are some fundamental points you should be aware of:
• A Healthcare Proxy is a legal document. It can be overridden by either a revised form or by your spoken word (when conscious and mentally competent). Your proxy is only called upon if and when important healthcare decisions need to be made and you are unable to do so for yourself. This means, anytime you are having surgery and being anesthetized, are unconscious briefly or for an extended period of time, or are declared mentally incompetent to speak for yourself. If you don’t have this form filled out in advance of need, then you forfeit the opportunity to exercise your right to choose a spokesperson.

• Remember, according to the U.S. Census Bureau, 28% of us die before reaching the age of 65 – so do yourself and your family a great service by educating yourself and them about Advance Healthcare Planning.

• When selecting your healthcare proxy and alternate proxy, your obvious choice is often not the right one. Don’t worry about offending anyone for not choosing them, but be sure to explain to them why you made another choice. For example, my brother was my obvious choice, but when I reflected on how hard it was for him to be around our mother when she was dying, I realized how hard it would be for him to serve me in that way and chose someone else, but have made sure he will be well-informed and able to just focus on being my loving brother. Other than the legal criteria spelled out by your state laws, consider the following in choosing your proxy. Pick someone who:
• Knows you well and will respect your wishes and needs even if they would make different personal choices.

• Can provide a safe emotional space to share your thoughts and feelings without imposing theirs on you.

• Will be able to take care of him or herself while serving in this capacity for you.

• Will support your needs even when the going gets tough.

• Will be able to speak up to doctors and caregivers to be sure your wishes are honored.

• Will stay informed of your condition and be available to make important decisions.

• Is likely to be available in the future. For example, does he/she live close by? If not, will they come if needed?

• Will be able to be assertive in handling potential conflicts between your family, friends, doctors, and/or caregivers?

• A Living Will is not always considered a legal document, but is intended to provide clear and convincing evidence of your wishes regarding care and treatment in the event that you are deemed to have no reasonable expectation of recovery. The purpose of a living will is to exercise your right to instruct your doctors and caregivers to withhold or withdraw treatments that would simply prolong your life under such conditions and to focus instead of keeping you comfortable and pain-free. Specific treatments that are often withheld or withdrawn are:

• Cardiac Resuscitation (CPR) is a group of treatments used when someone’s heart and/or breathing ceases. CPR attempts to restart the heart and breathing through mouth-to-mouth breathing, pressing on the chest to circulate the blood, electric shock, and/or drugs to stimulate the heart. When used quickly in response to a sudden event like a heart attack or drowning, it can be life saving. However, if someone has stopped breathing for more that 4-6 minutes lack of oxygen to the brain may lead to brain damage. It is important to realize that the success rate for CPR is extremely low for people at the end of a terminal disease process – especially for the elderly where successful CPR, if achieved at all, is seldom sustainable and often results in broken ribs.

• Mechanical Respiration involves inserting a tube through the nose or mouth and into the windpipe, forcing air into the lungs. For the dying patient, mechanical ventilation often merely prolongs the dying process until some other body system fails. It can supply oxygen, but it cannot improve the underlying condition.

• Artificial Nutrition and Hydration can save one’s life by supplementing or replacing ordinary eating and drinking when used while the body is healing. It can also be used long-term for those with serious intestinal disorders or an irreversible and end-stage condition. Withdrawing artificial nutrition and hydration does not cause starvation or pain to the patient and no legal or ethical issues exist when this is done in accordance with the patient’s wishes. It is the underlying disease and NOT the withdrawal of treatment that causes death.

• Antibiotics are often used in hospitals and other healthcare facilities where elderly and terminally ill patients are often vulnerable to contagious and opportunistic infections. Antibiotics tend to weaken the immune system and make the patient susceptible to other infections and a downward spiral of one infection and antibiotic after another.

• Maximum Pain Relief, including the use of narcotic medications for the terminally ill patient is considered by many to be truly compassionate and humane. It is indeed for this purpose that these medications exist because they enable doctors to effectively treat most pain and keep the patient comfortable.

2. Fill Out Your Forms: As mentioned in Part 1 of this article, there are lots of wonderful websites to consult about the in’s and out’s of Advance Healthcare Planning. For the state of New York, for example, I recommend going to Excellus BlueCross BlueShield to view their Advance Care Planning booklet which can be downloaded from their site. Similar sites exist for all states and provide detailed explanations of the in’s and out’s of Advance Healthcare Planning and provide the state’s forms.

3. Communicate Effectively
Talk to your healthcare proxy, family, loved ones, and doctors about the specifics of your wishes regarding end-of-life care. Don’t be surprised if they resist and/or insist they don’t want to talk about things like that. Ask them to listen for you because it is important to you and because you do not want any squabbling or misunderstanding over your wishes regarding care and your choice of a Healthcare Proxy.

4. Distribute and Enforce: Plain and simple – what good are your forms if no one knows where they are or what they say? You need to know where your forms are and you need to make copies and distribute them to your doctor(s), proxy and alternate proxy, and bring a copy when being admitted to the hospital or having a same day surgery – in other words, any time you might be put under anesthesia. Get a business card-size proxy form for your wallet. There is one, for example, that can be used for anyone from any state at the end of the Excellus BlueCross Blue Shield Advance Care Planning booklet mentioned in #2 above. Also, keep a copy of your proxy and Living Will in the glove compartment of your car and bring them with you whenever traveling – especially overseas.

5. Review Your Decisions at Least Each Year: When looking over your forms each year, be sure to check online to find out if there have been any changes in your state’s laws regarding AHP. If so, review those to be sure your forms and understanding of the laws are up to date. If needed, redo your forms and redistribute them as discussed in #4 above. Each year and whenever there is a major change such as a change in the law or a new medical treatment option that might affect your choices or you receive a terminal diagnosis, have a change of marital status, relationship, or a change of heart review your Healthcare Proxy and Living Will to be sure they remain an accurate reflection of your wishes.

Advance Healthcare Planning is your right, but it is your responsibility to get in the driver’s seat and exercise that right. That is not a one-time thing. Circumstances change and so do our minds. Pay attention and take care of your precious self so others can take care of you according to your wishes if such a time comes.

Please circulate this article among your social network – it might save someone’s life or at least save them from a lot of heartbreak.