Documenting your preferences for your future health care.


Be Open. Be Ready. Be Heard.



By Lydia Sterry | Submitted 2023


When seeing an Existential psychotherapist, at some point your relationship to death may crop up in the therapeutic conversation. Some tend to glide through this process while others seem to struggle immensely and find it emotionally draining. If the latter is the case or if you’re curious to explore this topic further, this blog might be useful.

It ultimately prepares you and your loved ones for a time when you may no longer be able to communicate or make decisions about your health. It highlights simple ways of how to put your advance care planning in place.

To truly die with dignity, we’ll possibly need good nursing, practical support, pain management and ‘good enough’ death preparations from ourselves in place.
However, if this is a sensitive topic for you, please take care while you’re reading.


WARNING!


TAKE A BREAK WHEN NEEDED


It’s good practice to leave things after each section to let all the information settle. Or alternatively, you could pick a day of the week and put aside a few hours where you’re not disturbed and able to concentrate.

If you find yourself stuck at any point, contact National Advance Care Planning Support Service on 1300 208 582 for help with creating your plan.

1. DON’T TALK TO ME ABOUT 'DEATH'


Some level of fear, uncertainty, or denial tends to surround the word ‘death’ for many of us. As a society we generally don’t want to talk about “it” and most families tend to wish to keep “it” a secret.

Most individuals and families simply don’t discuss the inevitable. This avoidance tends to manifest as pain and restlessness for the person dying and can lead to confusion and despair for some.

Our collective silence about death, suffering and mortality tends to place a tremendous burden on the people we love, and on the doctors and nurses navigating our end-of-life conversations. It’s seems ‘out of place’ and even ‘outdated’ to be discussing our own or our loved one’s wishes for the first time when they are in an I.C.U. bed, maybe voiceless or even pinned in place by machines and tubes.

It’s easy to forget that talking about death is ultimately talking about life, about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we could make a start on these discussions from a place of care and concern.

What most seem to have in common in all of this, is that they are not prepared for death. They say, “Let’s just talk about it another time.”

But what happens if we were to make some room to tentatively talk about it?

Is there someone you trust who you might talk about this DEATH topic with?

For some the thought of death can be petrifying and difficult to bear and there can be many personal reasons why we might ‘put off’ talking about dying. However, becoming ‘stuck’ in the ‘why’s’ or ‘reasons’ tends to only deter us from taking responsibly to look deeply into this theme.

A good place to start is to look at some simple questions that address the usual common resistances when first talking about yours or your loved one’s death. You could open up the conversation with someone you trust by saying,

“There’s some important issues I’d like to talk about with you. If something was to happen to your health, I wonder how you might want me to care for you. I wonder how I could plan for this. Because for me to properly care for you, I kind of need to know what your wishes are during, say, the final stages of an illness or disease. Could we maybe talk about it?”

You could start by asking I wonder:

Where might you want to spend your final days?

Who might you want to be present?

Who might you NOT want around?

If a possible disease progresses and your heart stops, would you want CPR and hospitalization?

What might your perfect LAST day look like?

What might you miss when you die?

Overall, we could ask ourselves why do some people fight and defy the inevitable hour of death while others meet it head on with acceptance and calm?

Or why do some of us choose to “protect” our loved ones from the inevitable and others choose to share the dying process openly?

There are no correct answers to these questions but they are connected to taking responsibility to plan or at least, to start having conversations about planning and preparing for your final days.

It’s worth noting how we all are eventually going to die, whether expectedly or not. When we prepare for our own or loved one’s death in advance, we can relieve the decision-making burden on those whom we love and create the opportunity for a peace-filled end of life.

However, planning for your own death takes a lot of time and energy to complete. It is much better to take the time now, while you have it, to lay out your wishes, directions and desires, so your passing can be harmonious, for both you, your family and friends.


Most tend to not worry about death, they worry about a bad death.

2. THE ‘WISH’ CONVERSATION


If you had three wishes before your death, what might they be?
Answering this question with your family/loved ones/friends could help with:


Getting the ball rolling towards starting real conversations about care in times of serious illness

Being clear and letting others know what areas matter most to you, ~the personal, ~the spiritual, ~the medical, ~the legal side maybe…

Allowing others to know exactly what you want

Helping to describe what 'good' care means to you, whether you are seriously ill or not

Helping to keep your family, friends, and doctor out of the difficult position of having to guess what kind of treatment you want or don’t want.



People who start 'wish' conversations tend to find they are helpful for everyone. Anyone can start the conversation within a family/friends network. Sometimes it begins with grandparents and other times it is the younger family members who bring up the topic. Regardless of your age, it could be seen as bringing a gift to the people around you.


An authentic attitude to death is one where we salute death as life’s destiny and assert our existence in spite of it.

3. LET’S START SHAPING THE ‘SHAPELESS’


In most doctor-patient conversations, the doctor might lead the way. But when it comes to planning for the end of life, there needs to be a role reversal. The patient, you, may have to take the lead in conducting end-of-life conversations and putting some ‘shape’ to this.

This may seem surprising to some but try to remember how dying is essentially a social and intimate family event that has become overly medicalized in the past century. There is room for individuals and families to reclaim dying from the hospitals and return to what we used to do before the 20th century, where preparing for the end of life as a family was the norm.

There is a point when most of us are ready to discuss this sensitive topic of death with loved ones. We may feel ready to have a conversation about our own deep understanding of how our culture, beliefs and values might influence what matters most to us in the last chapter of our lives.

So how might we start to explain all this to the ones we love?

Let’s look at some more questions:

Would you want to know how or when you are going to die?

What would you like people to remember about you?

If you could change one thing about death, what would it be… and why?

Have you thought about your own end-of-life healthcare choices?

Have you thought about what might go into your will?

Have you discussed being an organ/tissue donor or if you want your body to be ‘maintained’ long enough for your organs to be removed?


Discussing death is not morbid, taboo, or associated with bad luck. It’s the final chapter in our lives and can be quite relieving.

4. THE ‘LIFE SAVER’ CHECK LIST


Answering the questions below with your loved ones can dispel the 'fantasy notion' that we assume we're 'all on the same page.



~

If you’re suddenly told you have a terminal illness, would you want to obtain a second opinion about the diagnosis, who might help you to do this? What might be your treatment options? Would you want your doctor to explain the risks and benefits of each option? Would you want to discuss any alternative treatments that are available?


If related, have you asked your healthcare provider to explain the typical course of your illness including how and when you might die from this condition? How much time might you realistically have left and would you want to know?


Have you asked about symptom control and management (such as pain control or palliative care) in advance? Would you prefer to find out if you have local palliative care services which provide in-home visits and care in your area?


Have you asked about options and timing for hospice and end-of-life care in advance? Are you aware of what hospice providers are available in your community? Would you prefer to choose one in advance? What might be your “goals of care”? Would you prefer to ask your doctor to help you select medical therapies which could help you to accomplish these goals?


Have you thought about where/how you would like to die; in what surroundings; with what 'things' or meaningful music/videos/objects...?


Have you thought about if you would you rather die at home? Is it acceptable that you die in a nursing home, hospital or dedicated hospice unit? If so, have you selected the provider in advance?


Death can arrive in many different ways, at the end of a long life, before birth, by choice, by force, by mistake, planned, unexpected, painful, peaceful… We have no power over death or how it arrives.
What we do have power over is stating our preferences and working towards “dying well”.

5. THE ‘DREADED’ FORMS


Most terminally ill patients tend to have very little idea what they want during their final days. It’s easy to assume that once our bodies are possibly overcome with illness and disease, our choices are over. This couldn’t be further from the truth. By the time hospice arrives to provide care most people are too weak to discuss or explore their desires. This can potentially leave families and loved ones, scrambling desperately, trying to figure out what to do.

We could ask ourselves why we might leave these important decisions to our health care professionals who don’t know us? When this happens, it tends to carry lasting impressions and memories for sometimes grief-stricken family and friends.

It’s worth remembering how it’s never TOO EARLY to start these forms.

They can be filled in and placed in an easy to access, safe, digitally or stored box, where family or loved ones can find them. These forms are so to speak in ‘black and white’ and could reduce uncertainty and confusion for everyone during these times.

The reality of filling in these forms and having these 'form' conversations, is that their length can vary based on our needs. Sometimes, they’re short conversations because we have thought about it. Sometimes, they’re much longer conversations. Sometimes, they’re a series of conversations. Either way, the forms are a way of recording down the information to give us the best chance of communicating our wishes. They could be seen as the most important part of preparing for our death.

Have you filled out any such forms?

If the answer is no, these form style documents below spell out very clearly your exact wishes under certain circumstances.

Simple Life Directive

PSAS Level

Letter to your doctor


Accepting death as a natural part of the human condition, can help us with self-responsibility and give weight to our 'actions'.

6. MEDICAL AND LEGAL CHECKLIST


Have you thought about a medical or legal checklist?

If not, it's good to know that when looking at your required end of life paperwork (Medical and Legal), contacting a lawyer who specialises in ‘end of life’ may be worthwhile. You can ask him/her to provide and assist you with legally binding all your documents.

You could explore together and ask yourself:


Have I selected a Health Care Proxy and executed a Health Care Power of Attorney? Have I specified 1 or 2 alternative proxies?
(Health Care Proxy is a legal term for surrogate medical decision-maker, the person who will make medical decisions for you, should you become unable to make them for yourself).


Do I have an advanced directive(s) included in my living will? Is it legal for my state/country?
Have I included a PSAS form to help my healthcare provider and proxy/family to know at what stage of illness I choose to forgo certain medical interventions.


Have I executed a legal DNR (Do Not Resuscitate) Order?
(The DNR is a medical order signed by a doctor instructing health care workers not to perform CPR on you, but instead to allow you to die naturally and in comfort.)


Have I executed a legal DNI (Do Not Intubate) Order?
(The DNI is a medical order signed by a doctor instructing health care workers not to intubate you or place you on an artificial ventilator if your breathing is failing.)


Have I executed a legal DNH (Do Not Hospitalize) Order?
The DNH is a medical order signed by a doctor instructing health care workers not send you to a hospital from your home or nursing home facility unless needed for comfort.


Does my Health Care Proxy have a copy of my Living Will containing my advance directives such as PSAS, DNR, etc.?
Have I made certain to keep handy my copies of these documents? Have I told family members where I keep the originals and my handy copy? Family members, surrogate medical decision-makers and your doctors would benefit having copies of these items as well.


Do I need to update my trust? Have I set up my estate plan?
(Have I contacted an Estate Attorney?)


Is my will up to date and legally signed?


Have I executed a financial power of attorney?


Whichever lawyer you choose, you can ask for copies of all these legal documents mentioned.


When we allow ourselves to think about death, and by that, I mean really contemplate it, certain existential questions tend to creep in. We might think about,

“What happens when we die?”,
“Where do we go after we die?”,
“Do I believe in an afterlife?”,
“Will I go to heaven or is this it?”,
“Is there total annihilation/darkness or is my consciousness going somewhere?”,
“Will I meet God, what if there is no God?”.

Learning to 'stay with' to reflect on these questions and many others tends to be a step forwards to embracing death.

Death is not to be feared, but embraced with deep reverence and respect. Let’s talk about it, and plan for dying well, as part of a life well-lived.

7. PERSONAL COMMUNICATIONS WITH LOVED ONES


Have I discussed my preferences/conditions with my family/friends in complete honesty?


Have I told my loved ones EXACTLY what medical interventions I would like and not like? Do they know at what stage of illness I would choose to forgo certain therapies or artificial life support? Have I shared and spoken about my PSAS and other important forms with them?


Have I told my family who I have put in charge of my medical decisions when I can no longer make them? Does my health care proxy or surrogate medical decision- maker understand and agree to carry out my wishes and desires regarding my end-of-life care?


Have I considered having a private discussion with anyone to help them accept my decisions about my end-of-life care?


Have I contemplated talking to my loved ones, friends, and enemies about certain issues? Have I considered reflecting over saying things (if needed) such as:
“I’m sorry”, “I forgive you”, “Thank you”, “I love you”, “It’s OK to die”, “Goodbye”, “You mean… such and such to me”


Have I reflected over what are my beliefs are about death? Do I need to make peace with myself or if relevant, a higher power of some sort?


Have I considered psychological, emotional, counselling or support around the idea of coming to terms with my inevitable death?


Have I thought about identifying my legacy, life lessons, experiences, hopes, dreams... that I would like to pass on to family and friends? Have I spoken about these, recorded them on audio or video, or written them down?


Have I identified a person who can pass these along to the people whom I wish to receive my legacy/thoughts/hopes/dreams...?


Have I written or recorded down about my personal history/journey? Have I thought who might like to receive my personal history?


Winnie the Pooh said, "How lucky am I to have something that makes saying goodbye so hard."

8. PERSONAL CLEAN UP


Have I considered doing a personal clean up?

What unfinished projects around the house, at work, or in the community would I like to complete?

Do I have anything that’s ‘outstanding’ or ‘amiss’ with my family/friends to work through? Are there unresolved issues that I would like to sort throught with particular people?

Can I make a start to work through them? Are there any personal old grudges, enemies, where there could be an attempt to settle certain affairs?

Do I have any heartfelt goodbye letters/emails/audio/video recordings to do for certain loved ones/friends?

Have I created my “bucket list” of all the things I would like to do before I die? What am I able to accomplish with the time I have left?

If relevant, are all my digital photos/videos in one place? Have I told anyone where they are kept?

If relevant, have I planned for the care of my pets?

If I have children or grand children, have I left letters or videos to them?


Death ends a life, not the relationship.

9. FINANCIAL ISSUES


Have I completed my financial checklist?

Creating a comprehensive financial checklist can be a lengthy process. It's advisable to consult with an accountant to create one.

Some questions you may want to reflect on are:

Have I considered who will pay my bills during the immediate time after my death? Spouse? Accountant? Lawyer? Estate Manager? Executor? Is there someone I have in mind as a last resort to step forwards if needed?

Have I considered purchasing life insurance with a death benefit policy to pay for my funeral/burial if I don’t have the money for it? Have I considered putting funds aside to cover the costs?

If I have life insurance, are my policies all in order? Have I placed original policies with my important papers in a safe place where my family and/or executor knows where to find them?

Do I have/need long-term care policy, disability policy, life policy?

Have I contacted my life insurance company to see what the policy or time frame is for ‘paying out’ in advance of death for a terminal disease or other illnesses? Have I discussed with my loved ones how long they might need to wait for insurance payments to come through to fund funeral arrangements?

Have I considered pre-pay funeral expenses?


Death is a continuation of our lives without us.

10. BUSINESS ARRANGEMENTS


Have I considered the things around my professional life?


Have I thought about who might oversee discontinuing services no longer needed which are in my name?

Have I considered a “business survival” plan to include who may step in to close the business or take over?

Am I aware of who could ‘stand in’ to sell or transfer my business interests to loved ones/friends/charities?

Have I allocated someone to ‘step forwards’ to close down my online footprints/websites or other online material?

Have I considered passing on the website ‘killer account’ to someone I trust to assist them to close down all my online accounts? (This website ‘killer account’ searches for all your details online and gives you an option to remove them).


We know dying is a natural process like birth.

11. ASSEMBLING DOCUMENTS


This section may seem small, but it can be one of the most stressful sections for loved ones and friends to navigate. Most don’t realise how having all your personal certified paperwork in order could reduce everyone's stress levels significantly. These are some of the main documents and details you could consider finding and putting together:

Birth, marriage, divorce and citizenship certificates

Bank and credit card information

Passport

Investment details (e.g. shares, funds, trusts)

Centrelink and Medicare details

Superannuation Information

Private Health Insurance Information

Life Insurance Information

Other insurance information

House title(s); lease documents

Mortgage and loan details (e.g. House, car, etc)

Receipts and appraisals for valuables

Tax information

Your will

Decision making documents e.g., Advance care directive, power of attorney, enduring guardian etc...

(An enduring guardianship is a formal legal document that appoints a trusted person of your choosing to become your enduring guardian and make lifestyle, health, and medical decisions on your behalf. You can provide an enduring guardian with responsibility over decisions you can no longer make for yourself such as where you live, what home care services you receive and what medical treatments you are given. This can also include decisions over palliative care and life-extending treatments.)

Funeral information
Including any plans made, wishes etc not included in my will

Names and contact details for my lawyer, financial planner, tax advisor, broker or anyone else with knowledge of, or control over, wills and finances etc...

A list of all my usernames and passwords for important services I perform online

Have I made copies of them and had each one certified?
Once copies of your key documents and certificates have been certified by a ‘certified professional’ from for example your local library, it could make everything much easier for you as you or the people on your behalf negotiate your ‘end of life’ care.


Death is not the opposite of life, but a part of it.

12. PERSONAL MATTERS


Have I considered who I would like to have around me as I move closer to my death? Are their certain people, animals/things I would like around me?


Are there any cultural, spiritual or religious practices that I would like carried out before or at the time of my death, or once I have died?


Who might I need to ask to make sure my cultural, spiritual, or religious practices happen?


Do I prefer to have a rabbi, a member of the clergy or spiritual adviser with me at the end of my life?


Have I considered if I want to be buried or cremated or to have something else?


If I want to be buried, have I considered a burial plot? Would I like my ashes scattered or stored in a particular place?


What are my preferences for a memorial service? Have I shared my wishes to the person who is likely to organise your funeral?


Who might I give my personal belongings to?
(If married, most likely all your belongings will transfer to your spouse or family. If you are single, then you might need to specify what you want done with these items.)


Who might receive my special items, such as photos, mementos, personal artifacts etc.?


If I’m single and have kids, have I set up a guardian for my children for the immediate time after my death? Have I set up any short-term money plans/relief for them?


Have I considered setting up the paperwork for where my children will go permanently?


Have I considered what I might want to sell before my death? House? Car? Furniture? Land?


Don’t fear death, fear a life unlived.

13. FUTURE PLANNING LOGISTICS


Have I thought about what might happen a couple of days/weeks after?


Where might I want my body to be taken? Which funeral home/mortuary?


Have I made it clear to significant others that if I want to be embalmed? Buried? Cremated? Something else?


If relevant, have I made it known what are my burial/Casket preferences?


Who might I want to notify of my death? Have I made a contact list for my funeral or memorial notices?


Do I have burial plot? If cremated, where would I prefer my ashes be scattered or contained in?


Do I want/need a headstone/grave marker? Have I written out what I might want inscribed on it or what the design might look like?


Do I want a funeral service? Program?


Have I considered any special requirements for my ceremony? Military? Religious? Music? Food?


Have I identified a charity/friends/family members where all the flowers may go to after my funeral?


Have I considered a wake or a type of memorial party instead of a funeral?


An old lady once said with a smile, 'I’ll finally have the smoking hot body I’ve always wanted once I’m cremated!'

14. MY OBITUARY


Have I considered writing my own obituary without any pressure or just for fun?


Below are some thoughts/guidelines for writing your own (surface) eulogy and may include:

When and where were you born

Nick names or names known to others

Parents names – where they meet and married

Brothers and sisters or 'special people'

Early childhood – localities and interest

Schools attended; awards gained

Academic or trade qualifications and achievements

Some interesting items about childhood days

Details of any war or military service

Details of marriages, divorces, children, significant relationships

Details of grandchildren/great grandchildren

Details of any club memberships, positions held

Details of sporting achievements

Details of any hobbies or interests, travel, crafts etc..

Details of historical significance

Preferences, likes and dislikes

Details of activities – music, art, theatre

Any special stories, sayings, qualities that are significant to others

Special readings, music or poetry to be included




Next are some thoughts/guidelines for writing your own (deeper) eulogy:

What did it mean to me to be alive?

What were the possibilities that my life offered me?

What was the relationship to myself?

What was my relationship to others?

What were my responsibilities to myself?

What were my responsibilities to others?

What did I value and cherish dearly?

What was the nature of my anxiety that I experienced in my life?

What is my world view or the way I've constructed the story of my life?

What was/is my true potential?

~


Who might deliver the eulogy? Have I asked them in advance?

~

It can be useful to think of life not as a passing of time, but as a collection of experiences. How much are you willing to share those experiences before or after your death?


It's natural to die as it is to be born. And it's natural and sometimes comforting to share what’s in between.

15. THOUGHTFUL CONSIDERATIONS


In some ways when the time comes, we’re about to be interrupted with whatever we’re doing, to possibly give up all that we’ve hoped for and to leave everything we love. This could be difficult to come to terms with and as a result some tend to die in shock or with much anxiousness. However, with some ‘pre death’ preparation this shock factor could be reduced significantly, to then arrive at a point where there’s nothing more to be done.

This then could free up enough space to start exploring our own thoughts internally around our death and what we might believe could happen.

The poet Elizabeth Barrett Browning uttered the word: “Beautiful” during her final breath. The scientist Charles Darwin, remarked as he was dying. “I am not the least afraid to die.” And Thomas Edison, the great inventor, stated, “It is very beautiful over there” minutes prior to his passing.

But what is meant by 'over there'? What or who will be there? Is it 'nothing,' or is there something or someone? Is it a 'huge black void,' or is there something more spiritual?

Dying can be petrifying for some or lonely or even a beautiful experience for others. Whatever we might experience we could say we want all the people we love or who are important to us to drop what they’re doing and come to see us off. Similar to how friends may see us off at the airport, on a boat or a train. But, even if they could, we would still have to make the trip by ourselves and be with all our thoughts around what is about to happen.

What do you imagine happens after you die?

What would you like your death to really look like as you approach it?

Are you talking about it?

How might you be emotionally when death arrives on your doorstep or when it comes to saying goodbye?


It’s good practice to work through these questions and to continue processing this ‘death’ theme until you’re in a place where you are emotionally ready and prepared to accept your eventual death.

However, you’ll never be truly ready. You’ll have to take the steps. That’s what ready means… but at least you'll be ready to move into the unknown.

It's never too early to reach out to an 'end of life doula support', to begin exploring your options about how you would like the end of life to flow.

THE MINI TAKE AWAY:


Preparing for death is a deeply personal and individual process, and it can vary based on one's beliefs, values, and circumstances. While it is not possible to provide a one-size-fits-all approach, this blog highlights some thought-provoking themes and suggestions that may help you prepare for the inevitable. Overall, the take away is:

~Reflect on your values and beliefs:

Take time to contemplate your beliefs about life, death, and the afterlife, if applicable. Consider your values, what matters most to you, and how you want to be remembered.

~Communicate your wishes:

It is crucial to communicate your end-of-life wishes to your loved ones. This can include decisions about medical treatment, funeral arrangements, organ donation, and the distribution of your assets. Consider drafting legal documents such as a will, advance healthcare directive, and power of attorney to ensure your wishes are followed.

~Seek emotional support:

Facing mortality can be challenging, and it's important to have emotional support. Share your thoughts and concerns with trusted family members, friends, or a therapist who can provide guidance and a listening ear.

~Make practical arrangements:

Consider practical matters such as updating your important documents, ensuring your financial affairs are in order, and creating a list of passwords and accounts for your loved ones to access when needed. Review your insurance policies and update beneficiaries if necessary.

~Organize your affairs:

Compile important documents, including your will, birth certificate, social security card, insurance policies, and any other relevant paperwork. Inform a trusted person about the location of these documents.

~Review end-of-life care options:

Familiarize yourself with different end-of-life care options such as hospice, palliative care, and home care. Understand what services are available and discuss your preferences with your healthcare provider and family members.

~Consider funeral or memorial arrangements:

Reflect on how you would like to be memorialized or have your remains handled. Decide whether you prefer a traditional funeral, cremation, burial, or any other specific arrangements. Communicate your wishes to your loved ones and make necessary prearrangements if desired.

~Tie up loose ends:

Take care of any unfinished business or unresolved issues that are important to you. This might involve reconciling with estranged family members or friends, expressing gratitude, or making amends.

~Live in the present:

While preparing for death, it can be important to balance embracing the present moment and make the most of the time you have. Engage in activities you enjoy, spend time with loved ones, and prioritize experiences that bring meaning to your life.



Remember, the process of preparing for death can be emotionally challenging for some. If you find it overwhelming, seeking guidance from professionals such as therapists, counsellors, or end-of-life doulas can provide invaluable support throughout your journey.


Remember, you came into this world without possessions. You'll leave in the same way. From the unknown to the unknown.

Leave behind thoughtful plans for your mortality.

Wishing you a satisfying, 'good enough' death when the time comes.




If you would like to work through more of these points, simply email progressiveprocess@live.com.au or click here to book your free consultation.

RECOMMENDED BOOKS, WEBSITES AND FILMS


Below are some books, films and websites that reveal aspects of death and dying. Each one could possibly assist with working through this on going process.




Books:

1. The Denial of Death, Ernest Becker, 1973. Winner of the Pulitzer prize in 1974, Becker tackles the problem of man’s refusal to acknowledge his own mortality by exploring some tough questions. This is an existential classic. This book is a difficult emotional read. Becker, writing not long before his own death, directly deals with an issue most people wish would just go away. Yet Becker approaches the issue in a manner that makes it hard to not synthesize, ponder and explore further.

2. Being with Dying, Cultivating Compassion and Fearlessness in the Presence of Death, Joan Halifax, 2008. Inspired and practical teachings by this Buddhist teacher and PhD who reflects on her many years of work with the dying. Halifax offers lessons from dying people and caregivers to help us contemplate death without fear and help those who are suffering and transform that suffering into courage.

3. The Death of Ivan Ilyich, Leo Tolstoy, 1st published 1886. Tolstoy creates a short story where the lead character, Ivan, moves slowly towards his death in a state of depression and denial. His family is miserable. As he draws closer to the final hours he has realization after realization as he comes to a final transformation that brings closure and peace.

4. The American Book of Dying, Lessons in Healing Spiritual Pain, Richard F. Groves and Henriette Anne Klauser, 2005. This book offers a broad historic overview of the rituals and care of the dying including the current rekindling of the hospice movement. In addition to a historical perspective the book provides nine archetypal stories that offer insight and lessons in caring for the dying.

5. Mortally Wounded, Stories of Soul Pain, Death and Healing, Michael Kearney, M.D., 2007. Dr. Kearney has worked in end of life care for over 30 years in Dublin, London and the U.S. In this book he reflects upon his experiences working with the dying using Greek mythology as a metaphor to the death journey he and his patients have travelled.

6. Last Rites, Rescuing the End of Life from the Medical System, Stephen P. Kiernan, 2006. An objective yet personal account of how patients and families can regain control of the dying process in the technological medical maze. This award-winning journalist offers up both scientific research as well as intimate portraits from all walks of life.

7. Unplugged, Reclaiming Our Right to Die in America, William H. Colby, 2006. Based on court records, personal interviews and first hand experiences this book chronicles the medical advances that allow us to live longer, healthier lives, but can also make it more complex and difficult to die. This attorney/writer reviews current laws and proposed legislation that impact our ability to make end of life decisions.

8. Dying Well, Peace and Possibilities at the End of Life, Ira Byock, M.D. 1997. This is Dr. Byock’s landmark book telling stories of love and reconciliation in the face of death. It provides a blueprint for families, showing them how to deal with doctors, how to talk to friends and relatives and how to make the end of life as meaningful as the beginning by sharing intimate stories through the eyes of his patients.

9. …And a Time to Die, How American Hospitals Shape the End of Life, Sharon R. Kaufman, 2005. Through 27 narratives Kaufman provides a riveting account of how most people spend their final days. The stories give insight through vivid details and a complex dance that patients, families, doctors, nurses and hospital administrators engage in as death nears. A fascinating and frightening read.

10. The Hour of Our Death: The Classic History of Western Attitudes Toward Death over the Last 1000 Years, Phillipe Aries, 1982. A rich and complex source of material and investigative work. Aries explores everything from churches, religious rituals, and graveyards (with their often macabre headstones and monuments), to wills and testaments, love letters, literature, paintings, diaries, town plans, crime and sanitation reports…even grave robbing. Aries ranges across Europe to Russia on the one hand and to England and America on the other. As he sorts out the tangled mysteries of our accumulated terrors and beliefs, we come to understand the history—indeed the pathology—of our intellectual and psychological tensions in the face of death.

11. The Tibetan Book of the Dead, First complete American translation in 2006. With an introduction by The Dalai Lama this translation took many years to complete the edition faithfully from centuries old work. This document includes one of the most detailed and compelling descriptions of the after-death state in world literature.

13. May I Walk You Home? Joyce Hutchinson, RN, 1999. Touching short stories compiled by a Hospice nurse that is written in a format of brief stories followed by a brief guided meditation, prayer then concludes with a thought for the day. These simple stories and reflections provide comfort for the caregivers of the very ill.

12. A Practical Guide to Death and Dying, John White, 2004. Consciousness researcher John White provides a basic and compassionate look at death and explores the biology, psychology, and metaphysics of one’s own demise. This book will benefit readers who are ill and those who are healthy, readers who care for the dying, and readers who are just plain curious about what lies ahead.

13. Holy Sonnets, (Also known as the Divine Meditations), John Donne, 1663. A series of 19 poems that predominately deal with death and dying. Sonnet 10 is the most quoted piece, Death Be not Proud.

14. It’s OK to Die, Monica Williams-Murphy, M.D. and Kristian Murphy. A ground-breaking book filled with graphic stories straight out of the Emergency Room illustrating how most Americans are completely unprepared for death and dying. In response, the authors have created a unique and comprehensive guide urging EVERYONE to prepare in advance, to assure their own peace and to prevent the suffering of their loved ones. Click here to learn more about “It’s OK to Die™”

15. Being Mortal, Atul Gawande, M.D. uses his father’s powerful story to explore the concept of shared ¬decision-making in medicine — the idea that the ideal modern doctor should be neither paternalistic nor informative but rather interpretive, helping patients determine their priorities in life and death and achieve them. He shares lessons he learned from a palliative care doctor who advises him to “ask, tell, ask” during a difficult discussion about a patient’s prognosis: Ask what patients want to hear, tell them and then ask what they understand. A good read for those who are involved with patients with a serious illness.



Films:

1. Departures. Japanese movie with English subtitles. 2009 Academy Award Winner for Best Foreign Language Film. “When his orchestra disbands (cello player), Daigo Kobayashi moves back to his rural hometown. Desperate for work, he secretly takes a job as a “Nokanshi,” a funeral professional who prepares the deceased for burial and the next life. While working with the families of the “departed,” Daigo embarks on a spiritual journey of his own as he finally experiences the joy and wonder of living and dying.

2. Wit. 48-year-old Vivian Bearing is a professor of English literature. She is diagnosed with ovarian cancer. Her oncologist prescribes various treatments and as she suffers through the various side-effects, she attempts to put everything in perspective.
As she grows increasingly ill, Vivian agrees to undergo more tests and experimental treatments, even though she realizes the doctors treating her, including former student Jason Posner, see her less as someone to save and more as a guinea pig for their treatments. The only person who seems to care for her as a person is Susie Monahan, one of the nurses on the staff. As she nears the end of her life, Vivian regrets her insensitivity and realizes she should have been kinder to more people. In her time of greatest need, she learns that human compassion is of more profound importance than intellectual wit.

3. The Sea Inside. 2004 film based on the true story of Ramon Sampedro, played by Javier Bardem, a Spaniard who’s condemned to life as a quadriplegic. Determined to die with dignity, Sampedro leads a 30-year campaign to win the right to end his life. Spanish Foreign film with sub titles.

4. The Tibetan Book of the Dead. 2003 film deals with the essential question that all human beings confront, the uncomfortable truth of dying and death. Based on The Tibetan Book of the Dead the film presents life and death as transitions. This presentation of the TBD can open our eyes and heart to an alternative and exciting view of this question of what it means to be a human being. Here we enter a time-warp that visits a mythic culture with ancient truths that are timeless and relevant to us with our highly evolved consciousness.

5. My Life. 1993 film with Michael Keaton playing an advertising executive who learns he is dying as his wife (Nicole Kidman) is pregnant. The film beautifully focuses on his anger over everything: the unfinished business of his life, his family and the probability he’ll never meet his child. Keaton’s character begrudgingly goes to a “holistic” doctor who helps him recognize the corrosiveness of his rage and to let it go along with many other aspects and attachments in his life.

6. It’s My Party. Bittersweet 1996 film stars Eric Roberts as Nick, a gay man with AIDS who learns he’s contracted a terminal brain disease. Nick decides to throw himself a two-day farewell party, where friends and family gather to offer their good-byes — the most touching of which comes from Nick’s former mate, Brandon (Gregory Harrison), who left Nick when he learned he contracted HIV.

7. Husbands. 1970 film written and directed by John Cassavetes. Gus, Harry, and Archie are three husbands with families in suburban New York. All are professional men. As the film begins, they are shaken when their best friend Stuart suddenly dies of a heart attack.
They have difficulty coping with the death, and spend two days hanging out, playing basketball, sleeping in the subways, and drinking, including one lengthy scene at a bar in which they have an impromptu singing contest. Harry goes home, has a vicious argument with his wife, and decides to fly to London. The other two decide to go with him. This film, was described by Time magazine as Cassevetes’ finest work. It portrays and explores a dark, bleak view on how we deal with death and dying in suburban America.

8. Two Weeks. 2006. Sally Field plays the lead in this bittersweet dramatic comedy about four grown siblings returning home to gather around their terminally ill mother (Field’s) for what they think are her final days. But as she lingers, for two weeks, they all come to terms with their grief, anger and love and ultimately their lives.

9. The Tree of Life. 2011 newly released film that is cast somewhere between a coming of age film mixed with family drama and the creation of the universe. The film opens up with the death of a son and proceeds with flashbacks and forwards with unbelievable cinematography and questions. The movie leaves you with more questions than answers, but maybe that was the point.



Useful Websites to make a start:

1. https://www.health.gov.au/health-topics/palliative-care/planning-your-palliative-care/advance-care-planning Excellent government advice for topics on estate planning, advanced care planning and also voluntary-assisted dying for each state.

2. https://www.gatheredhere.com.au/ A recommended website for planning a funeral.

3. https://www.lastpass.com/ Enables a digital executor to manage the various social media, email, banking and subscription accounts.

4. https://www.abc.net.au/austory/a-community-undertaking/13932294 ABC TV’s Australian Story showing a not-for-profit funeral service, 'Tender Funerals', which delivers personalised, meaningful and affordable funerals.