Archive for category: End of Life

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.

An email I received from a reader provoked this article. She wrote “I’m 50 years old, sitting in a hospital room with my 43 year old husband, who is trying to recover from surgery for esophageal cancer. His diagnosis in early March sent me into a tailspin, triggering many unresolved fears that I have around the concept of mortality.” Like so many of us, this woman was thrown into the chaos of dealing with matters of life and death. Unfortunately, we do not do serious illness and death well in this country. Most of us don’t know what to say, what to do, or how to comfort one another. We never learned how because we live in a society that treats death like an invisible elephant in the room. Like a soldier having his first experience under fire in battle, nothing prepares you for the thoughts, feelings, and devouring experience of facing your own brink of death or that of a loved one.

Here are four sanity-saving and powerful keys to coping well when critical illness or death catches you by surprise.

Acknowledge and accept what is happening. Trying to pretend things are other than how they are only postpones dealing with reality. And, the only moment of our lives when we have any choices is the present one. So, it is important to do whatever is necessary to face the truth head on and settle into it so you can decide how to proceed. Pay attention not only to the news you are receiving, but to how you are reacting. Bear witness to what is happening inside yourself. Are you shocked? Angry? Unable to listen? In denial? Wanting to believe this is a lab error? These are all perfectly normal responses, but they do not serve as a solid foundation from which to respond to the situation.

As stated in a previous post:

Acceptance is a conscious choice to drop all forms of resistance to whatever has come present in the moment and making the most of it. Acceptance isn’t about liking or approving of something. It is about letting life flow and unfold without getting in the way. It is about being receptive rather than exerting resistance to what comes present.

(For more about acceptance see my previous article on the topic.)

Love yourself. It is not uncommon to be critical of your own ability or lack thereof to face the rigors of critical illness and death — your own or that of a loved one. Don’t hold your behavior up against some fantasy standard of how you “should” be thinking, feeling, and behaving. Stay present in the truth of how it IS for you and love yourself through it. That means not “shoulding” on yourself. Give yourself permission to be a mess mentally, physically, and/or emotionally. It means recognizing that you are in new territory and don’t have a reference point for what is “normal.” Choose to be kind and compassionate towards yourself and others in the situation, and allow yourself to experience your negative thoughts and feelings. When you deny or bottle them up, they build up pressure within you that will inevitably result in either an unattractive outburst or an implosion of negativity into your physical being. Let yourself be however you are. If you are the caregiver, it is easy to feel guilty or selfish for caring about your own comfort and well-being when your loved one is facing a life or death challenge. Remember that you must only give to others from your overflow. When your giving depletes your own needed resources, it is natural to feel resentment, anger, and self-pity. It is not bad to feel these things – they are perfectly normal reflections back to you that you are not taking care of yourself and need to do so. If you find yourself unable to cope – reach out for professional help – someone who can bear witness to your authentic experience and can teach you how to support yourself through it. Seek help from someone with seasoned experience dealing with dying, death, and bereavement.

Don’t attempt to protect others from the truth. When you tell yourself you are protecting another from a devastating truth, actually you are preventing them from having their own experience. This attempt to put a lid on or deny reality, is a choice to try to control the situation rather than allowing it to be as raw and real as it is. This is a decision based on fear. Alternatively, when we are authentic and tell the truth – no matter how unpleasant, we are respecting the other person’s right and ability to cope and are keeping the door of honest, intimate exchange open rather than playing the game of pretending the stakes aren’t as high as they are. Go against everything you have been taught about the great death taboo. Our society has trained us to avoid the “D” word. I say, “Say it outloud! Death is as essential to the human experience as life is – be vulnerable to it. Tell your loved ones what you are thinking and feeling. Talk about your beliefs – what matters to you and what you believe to be true. Give voice to your fears so others can love you through the experience.

Maintain mindfulness. Matters of life and death have a timeless quality, yet involve an endless bombardment of new thoughts, feelings, and experiences. Hold the intention of staying current with what is happening in the moment. We have all kinds of defense mechanisms for dealing with bad news – denial, shock, anger, isolation to name a few. Know that these are normal. Use some good questions to move yourself back into a functional awareness of what is happening. For example, ask yourself “What is the most loving thing I can do for myself in this moment?” or “How do I really feel about this?” “What are my options?” If you are the partner or loved one of the patient, consider asking these questions both of yourself and the patient. If a complicated hospitalization or prolonged illness is involved, keep a daily journal of what is happening for the patient medically, physically, mentally, emotionally, and spiritually. These notations often hold essential keys for better understanding the situation.

We may not have any control over the fact that we are all a phone call away from tragic news. However, we do have the ability to affect how we handle that news. Just do your best – that’s all any of us can really expect of ourselves.

I have far more I’d like to say on this topic than can be contained in a single post. So I will summarize my top five here and do follow-up articles on each of the five in the future series, What To Do When A Loved One Is Dying: Parts 1-5.

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.” Needless to say, we are not taught how to face our own death or that of a loved one, and are likely to panic in death’s presence. Or at the very least, we’re likely to be ill at ease because we don’t know what to do or not do. So start by recognizing this state of affairs, and 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.

This goes for others as well. No two people are going to respond the same way and 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.

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 as you 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. If you enter your loved one’s room and say something like, “Your color looks good today,” when you both know he or she is dying, your real communication says, “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 them 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 holding hands and stroking our loved one’s 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, 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, his or her authority is to be equally respected. 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, which might include 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.

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

Steve Jobs’ last words, spoken with great delight, were, “Oh wow! Oh wow! Oh wow!” What was he seeing? Perhaps what those returning from near-death experiences consistently report — a sense of moving through a dark tunnel beckoned by a compelling bright light, feelings of peace and well-being, the knowledge of being outside of the body, what some call an intense feeling of unconditional love, and encounters with beings of light. This piercing of the veil of “the other side” unwaveringly suggests that “passing over” is a beautiful experience.

In stark contrast to these images, we live with a cultural consciousness about death that personifies it as “the Grim Reaper” or “the Angel of Death.” Not knowing when or how our time will come, many live in fear of the unknown and uncontrollable aspects of death with a sense of a foreboding encounter with darkness and evil. Nowhere is this more vividly demonstrated than in an Internet image search of the word “death” that yields haunting black-and-white images of skulls, crossbones, and the Grim Reaper. I encourage you to take a moment and do an image search now. These portrayals demonstrate the power of the death taboo on both our conscious and unconscious awareness.

Among the top 10 images, several date back to artwork from the 1300s during the Black Plague when half the European population was wiped out. The plague was considered a form of punishment by God. Symbolically representing death — with depictions of skeletons, skulls, and crossbones — was a common way of mocking it in order to reduce feelings of helplessness and anxiety. People wore these death symbols on their clothing as a way to fool Death into thinking that they had already been touched and should therefore be left alone. If these images are indeed a valid reflection of the collective consciousness about death today, it is no wonder that so many live in fear of death and treat it like the unspeakable elephant in the room.

As children, we could run to the comfort of our parents with our fears. It is a sad commentary on our society that as adults so many of us silence and suppress our own fears about death’s unknowns, concern about unmanageable pain, the loss of control over one’s own life, and the possibility of being isolated from loved ones at life’s end. Rather than sharing our beliefs, thoughts, fears, and concerns about dying and death, we suffer in silence having no idea how to wrap our brains around the reality of death or to even broach the subject with our loved ones or doctors. Far too many of us, including terminally ill patients, put a smile on our face and silently suffer in emotional isolation. The death taboo interferes with our ability to have a healthy relationship with death.

The good news is that since the 1960s, momentum has been building to transform our culture of death. Among the most apparent changes and influences:

• Beginning in the late 1950s, the conversation about human mortality and the American culture of death moved from academia and religious institutions to the general public — raising the topic from our unconscious to conscious minds.

• The hospice movement came to the U.S. in the 1970s, exposing the dying and their families to healthier role models of how to relate to death.

• The sharing of accounts of near-death experiences in popular literature began in the mid-70s, consistently offering beautiful new images of death.

• Philanthropic funding led by the Robert Wood Johnson Foundation and George Soros’ Open Society Foundation began in the 1980s, and focused on changing theculture of death in America through legislation, public engagement, and changes in the fundamental philosophy of death in the professional education of doctors and nurses.

• In 2011, the 79 million baby boomers began turning 65 at a rate of 10,000 each day. This will continue for another 17 years.

• A 2009 Newsweek poll estimated that 93 million Americans (30 percent) self-identify as “spiritual but not religious,” saying they are deeply spiritual but claim no specific religious affiliations. This group has doubled in size in the past decade and is a driving force of change in social rituals around birth, marriage, and death that are not rooted in religious doctrines.

Buoyed by the confluence of these forces, this is an exciting historical moment where matters of our beliefs and values regarding life and death are concerned. Both culturally and individually, we have a great opportunity to rethink our most fundamental definitions of “birth” and “death.” Our physical and spiritual understanding of these terms must be reconciled in the process. Here are some questions to ponder:

• When does life start and when does it end?
• Are these terms specific to the physical beginning and ending of life or are there other dimensions of our existence that precede and follow what we commonly refer to as a lifespan?
• Is the physical birth and death and lifespan of an individual all there is?
• Or, is there more than meets our eyes?
• Is the start of life “good” and the end “bad” as reflected in current social attitudes?
• Or, is this a matter of interpretation?
• How does the fact that the personhood you commonly know as yourself will die inform the way you live your life?
• When a loved one is dying, are you able to bring your authentic self to the situation and be a comfort, helper, and to communicate your loving fearlessly?

Never has there been a time when we had a greater opportunity to reevaluate our beliefs and values regarding life and death and to hold ourselves accountable for the quality of our relationship to both. Let’s talk about this. Please share your thoughts below.

This is a picture of my mother, Grace Mundy, six months before her death in 2006. We shared a home during the final nine years of her life. Being her friend and caregiver through to her death was a walk through the valley of the shadow of death. It taught me the following life and death lessons that I will always treasure.

1. It’s okay to be afraid. It is perfectly normal to have fear about your own death or that of a loved one. Every fiber of our being has been acculturated to survival and to fear of the unfamiliar. So, don’t deny your fear — you can’t move past it until you own it and realize that it is just one of several possibilities of how to view the situation. Fear can either stop us in our tracks or be used as a steppingstone to learning and growing and strengthening ourselves. The choice is ours to make.

2. Let nothing be more important than loving each other. When all is said and done in our lives, most of us find that our greatest treasures were tender and heartfelt moments shared with others. So remember that as you journey through your life. Next time someone you care about is feeling blue, receives a terminal diagnosis, or is simply getting really old, make time to share your heart with them. Override the inclination to buy into your own excuses about how you don’t have the time or energy or don’t know what to say or do or it simply isn’t convenient to show up for them.

When my mother was dying, there was one person she kept asking to see because there was unfinished business between them. Four times she asked — one when in intensive care with a 50/50 chance of making it through the night. Each time I called this person and shared my mother’s request, she showed up four days later with an entourage that minimized the opportunity for them to have one-on-one time together. The resolution never occurred between them, but my mother made peace with the situation in her own heart before she died. Ego positions prevent the flow of love between people.

3. Everyone who is dying needs an advocate who loves them. When someone is critically ill or simply frail, they need their own energy just to cope and to heal if that is an option. There may be all kinds of specialists being called in to consult on the case and all too often the left hand doesn’t know what the right hand is doing. Someone needs to keep track and connect the dots.

In my mother’s case, for example, she kept getting infections commonly spread in hospitals. Each infection brought on yet another antibiotic with another set of side effects that would make her susceptible to yet another opportunistic infection and another antibiotic would be prescribed and so on. I used to spend seven to ten hours a day with her when she was hospitalized just to keep track of all the things they were doing to her and I was busy all the time. It wasn’t until after it was all over that I realized I should have kept a notebook handy and that the specialists were myopically focused on treating her symptoms.

4. Death is not a popular topic among doctors. The medical model for terminal disease and death is a work in progress. Many doctors, having taken an oath to preserve life, perceive a patient’s death or the need to surrender them to palliative care as a personal failure. So expect most doctors to do everything they can think of to keep your loved one going and don’t expect them to broach the subjects of palliative care or death.
Between hospitalizations, my mother paid a lot of visits to the ER and it was there that one brave doctor finally took me aside and told me that there was really nothing further medically that could be done for her and suggested that we consider hospice care. I burst into tears, he held me, and comforted me until I was over the shock of hearing what no one wants to hear — that your loved one is, indeed, going down a slippery slope toward death. I will always be grateful to him for telling me the truth so we could adjust our plans accordingly.

5. No matter how anyone else’s behavior looks to us, they are doing the best that they can. I’ve adopted a favorite expression that we are all doing the best we can and this is what it looks like. Each of us is a complex assortment of skills, abilities, fears, traits and preferences. Compassion comes forward when we realize that how we think another “should” behave is of no significance, for indeed, if we walked in their shoes, we would likely behave no differently than they do. Particularly in stressful times, compassion for one another goes a very long way.

6. When someone you love is dying, it is their dying not yours. No matter how smart you are or how certain that your own ideas of what should or should not be done are the “right” way, your job is not to lead the way but rather to follow the lead of the one who is dying. Let them die their way, not yours. If they want to be alone, let them. If they don’t want to eat, let them. If they want to change their will, let them. If they want to talk about dying, let them. Your job is to support them not to direct them.

7. Don’t leave yourself with any regrets. Whether you are the person dying or the one loving and supporting the dying to their death, your job is simply to do your best to be true to yourself without hurting others. Pay attention inwardly and be bold about honoring yourself. If there is unfinished business, let the one who is dying decide whether or not to tend to it. Don’t forget to practice forgiveness and to lavishly let those you love hear you tell them so or to experience that love through your actions.