Practical Advice for Living Life and Facing Death. Discover the transformative insights in “A Beginner’s Guide to the End” by renowned palliative care physician Dr. B.J. Miller and journalist Shoshana Berger. This empowering book navigates the sensitive topic of mortality, equipping readers with the tools to approach the end of life with clarity, compassion, and grace.

Explore the invaluable wisdom within these pages and unlock the secrets to living your best life, no matter what stage you’re at.

Genres

Self-help, Memoir, Palliative Care, End-of-Life, Spirituality, Personal Growth, Health and Wellness, Grief and Loss, Inspirational, Philosophy

“A Beginner’s Guide to the End” is a compassionate and comprehensive exploration of the end-of-life experience. Drawing from Dr. B.J. Miller’s extensive expertise in palliative care and Shoshana Berger’s journalistic expertise, the book delves into the practical, emotional, and existential aspects of mortality.

It provides readers with a holistic framework for navigating the inevitable, guiding them through essential considerations such as advance directives, financial planning, and how to have difficult conversations with Loved ones. The authors emphasize the importance of embracing mortality as a natural part of the human experience and cultivating a sense of self-awareness and purpose in the face of life’s fragility.

Review

“A Beginner’s Guide to the End” is a remarkable and profoundly impactful work that transcends the typical self-help genre. The authors’ compassionate and insightful approach to the subject matter sets this book apart, offering readers a refreshingly honest and empowering perspective on mortality.

By blending personal anecdotes, medical expertise, and philosophical insights, Miller and Berger create a compelling and accessible resource that empowers readers to confront the end of life with clarity, courage, and grace. This book is a must-read for anyone seeking to deepen their understanding of the human experience and unlock the secrets to living a more fulfilling and purposeful life.

Recommendation

Combining editor Shoshana Berger’s communication skills with hospice doctor B.J. Miller’s medical knowledge, this reference guide to dying is essential reading. Well-organized and thorough, compassionate and wise, it covers planning your estate, coping with bad news, handling the costs of terminal illness, knowing what to expect in hospice care, and dealing with funeral and memorial options. Miller and Berger help you handle the details and the inevitable paperwork while offering practical compassion for your path.

Take-Aways

• When planning ahead for your death, don’t leave a mess, leave a mark.
• Death has its own paperwork. Do it in advance.
• Dying doesn’t have to be expensive.
• Dealing with a terminal illness is logistical and deeply personal. You are in charge.
• Palliative and hospice care are available to everyone and can provide compassionate care for you and your family.
• Caregiving has its challenges and is also a gift. Self-care is important.
• You have options about when to die. Design your funeral.
• Being with a loved one as he or she lies dying is a sacred time.
• Ending a life means tying up loose ends for you and your loved ones.

Summary

When planning ahead for your death, don’t leave a mess, leave a mark.

Life doesn’t offer “death ed” classes, but knowledge can make the end-of-life experience much easier. The more you plan ahead while you are well and have the cooperation of your loved ones, the less anxiety you will feel if your health declines. Only about 10% of the population dies suddenly, so the other 90% has no excuse for not having a will or end-of-life care plan.

“Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”

They say you can’t take it with you – and they’re right. Occasional purges are good any time, but especially as you age. Don’t leave a mess for your family to clean up. Bequeath heirlooms while you are alive to share the story behind them, and sell what you don’t need. Get your relationships in order. That may mean sharing old secrets, or saying you are sorry and that you love someone despite a long conflict. Your emotional pain dies with you. Theirs won’t.

A legacy is often monetary, but it can also be other things of value, such as your life story. Monetary legacies could be scholarships, endowments or philanthropies. You can donate stocks, retirement plans, life insurance policies, real estate or tax-exempt IRAs. Something personal, such as a letter, ethical will or a family tree, also has meaning and value.

Death has its own paperwork. Do it in advance.

Death comes with paperwork. Trusts and wills let your family avoid probate court. Update your documents regularly, consult professionals as needed and create a “when I die” file. Prepare four essential documents:

1. “Advance directive” – This “living will” outlines your health care wishes. It is a “state-specific legal document” you can download for free. You specify someone as your “health care agent,” and you clarify your end-of-life wishes and whether you want to donate organs.
2. Durable power of attorney for finances – Assign someone you trust to be your fiscal agent. A banker or an accountant would be best.
3. Will – This divides up your property. Designate an executor and assign guardians if you have young kids. Talk to your spouse and children to avoid surprises after you die.
4. Revocable living trust – If your estate is substantial, have both a trust and a will for transferring your assets.

Dying doesn’t have to be expensive.

Medical bills are the leading cause of bankruptcy in the United States, even among people with medical insurance. Before you make decisions, learn what your insurance covers and when you will need help, such as US government support through Medicaid. Some ways you can save money on medical care include:

1. Health savings plan (HSA) – You pay in advance into this pretax savings plan.
2. Accelerated death benefits in your life insurance policy – This will pay you in the last six months of life, but it may reduce your heirs’ payout.
3. Life insurance with a long-term care component – Long-term care coverage includes rehab centers, nursing homes or in-home assistance.

People assume that you must be penniless to qualify for Medicaid, but that’s not true – though it may be a last resort. State regulations vary, but generally, you can’t have more than $2,000, although you can retain your car and home. Beware you may not get top-tier care, and some facilities don’t accept Medicaid (which differs from Medicare which is for older people and is not based on financial need). Most states don’t compel your family to take on your debts, but debtors will go after your estate, though they may fail. The family may have to pay outstanding medical bills, which they often can reduce by negotiating.

Dealing with a terminal illness is logistical and deeply personal. You are in charge.

Getting the news that your illness will kill you is traumatic. Determine who you feel comfortable talking to, including your doctors. Focus on your care goals, and prioritize what matters most. Decide how to manage your illness. You may want to treat your symptoms so you can retain a decent quality of life. The medical system functions to prolong life, no matter how uncomfortable the methods, but only you know what kind of life is worth living. Prolonging life consumes some people so much that they neglect to live during the time they have.

Palliative and hospice care are available to everyone, and provide compassionate care for you and your family.

All end-of-life care is palliative, while hospice is for people in the last six months of life. It is “the way to get the most services into your home.” Hospice teams make dying more comfortable for you and your loved ones. They address your physical, emotional and spiritual needs. The care team comes to your home. Take advantage of it as soon as you need it. Don’t prolong your suffering needlessly.

“Giving the people we love agency and choice in our care is something that may feel both right and useful.”

To qualify, you must have a terminal illness and certification from your doctor that you have less than six months to live. You must forgo further attempts at a cure. Once you enroll, the hospice will assign a doctor and nurse to you. You will also have visits from an aide, a social worker and a chaplain. You will get medical supplies, including a bed, 24-hour telephone support and pain management. You will still rely on family and friends for the necessities of day-to-day life. Residential hospices exist, and many nursing homes provide hospice care. Some are inpatient facilities that also offer medical interventions. Palliative care is becoming more popular in the United States. Designed on the simple principle of alleviating suffering, it is available at any stage in your illness, with any prognosis. Insurance usually covers it, but you are likely to have co-pays.

Caregiving has its challenges, but it is also a gift. Self-care is important.

Caregivers do some of society’s most important and least-appreciated work. The United States has 40 million caregivers at any given time. Most are women, though increasingly, men also help.Caregivers have an exceptional experience when they meaningfully “honor innate vulnerability” in the sick.

“Self-care is a muscle you need to learn to flex so it becomes part of your routine, instead of a rare treat.”

This is about the person who needs you, not about you, but you will face many challenges. Caregivers are more likely to develop health problems. They face an average 33% income loss and some 11% of caretakers have to quit their jobs. The value of informal care is double that of formal care, estimated at $500 billion.

You have options about when to die. Design your funeral.

Several states have made physician-assisted death legal. Unlike euthanasia – in which doctors administer lethal medication and which remains illegal in the United States – patients take a prescribed lethal dose of Seconal to end their own lives. Some patients appreciate this level of control over their death. To qualify in states where it is legal, a patient must be 18 years old, have a terminal diagnosis from a doctor, and be able to voluntarily request and administer the lethal dose. Patients must involve two physicians, and some physicians may decline to participate. Where it is legal, states do not regard physician-assisted death as suicide, and it will not affect your life insurance.

To make sure your beliefs are followed, make decisions about your funeral in advance. You can wear what you want and have the music you want. You can choose to be embalmed, buried in a casket or cremated. You can have your ashes scattered, kept in an urn or launched into space. Some jurisdictions allow a natural or “green” burial without embalming so the body can decompose naturally in a designated preserve.

“The dead are overtaking the living on social media, and soon there will be mass graveyards in the clouds.”

Set aside money for your funeral, which in the United States should cost less than $10,000. You can pay a funeral home in advance or ask for a detailed price list. Funeral homes usually pick up the body, prepare it for burial, help with vendors like florists, conduct the burial – with your clergy if desired – and provide a room and refreshments for visitors.

Being with a loved one as he or she lies dying is a sacred time.

“Active dying” – the matter at hand in the last few hours of a person’s life – is a special, although painful, experience for loved ones. The person dying probably won’t be aware of other people, but it is important to understand what he or she is going through. As the body shuts down, so does the brain. Delirium is common, with moments of lucidity. The body rejects food closer to death. The skin mottles because of poor circulation, and the pulse fades. Breathing will change, becoming quick or slowing down dramatically.

“Death is a big deal, and the body knows it.”

People do not want to suffer in their final hours. Doctors and nurses know when to intervene. Opiates have a bad reputation, but their purpose is to alleviate pain, not to cause death. Some people want to be as conscious as possible for their own deaths. Care teams try to accommodate that, but pain can interfere with lucidity. Some caregivers give up sleeping and eating to keep vigil over a dying loved one. You might not be present when death comes, but don’t feel guilty. By this point, you will have done all you could do. This passage is a precious time for peace. In a tree’s life cycle, the first 100 years are for growth, the second 100 for living, and the final 100 for dying, giving nutrients to the ecosystem and living on within it. Your loved one’s death may make you feel vulnerable, but it can also put things in perspective.

Ending a life means tying up loose ends for you and your loved ones.

Paperwork persists after death. A coroner must pronounce that the person is dead and provide a death certificate. Get several copies. With this document, loved ones can make further arrangements for the funeral, financial arrangements and property disbursement. Finalizing everything can take a year and often longer. Take care of these things shortly after someone dies:

1. Arrange with the funeral home for a headstone.
2. Notify the post office and the election district.
3. Cancel the driver’s license, memberships and subscriptions.
4. Contact a tax specialist. The deceased must still pay taxes in the year of death.
5. Check online accounts, such as PayPal, for activity and funds.
6. Shut down automatic payments. Close social media accounts or designate them as memorials.

To handle these matters, you will need copies of the death certificate, the will, marriage and birth certificates of surviving children, insurance policies, pensions, benefits, property deeds, automobile registrations, stocks and bank information, income tax returns, loans, a Social Security card, credit card statements, and evidence of insurance and medical coverage.

Writing an obituary is not easy. A worthwhile obit reflects a person’s achievements and relationships, and outlines why his or her life was meaningful. Be truthful, but warm. Mention something unusual about the person. List all the survivors. If you wish for charitable donations in lieu of flowers, say so.

“You never ‘get over’ the death of a loved one – that’s not the goal. Living on is.”

Some families want to keep the circumstances of a death private, but you can address sensitive subjects as honestly as you think is best without diminishing the deceased. In death as in life, personal details matter to memorialize your loved one’s passing. Grief is a communal act to undertake with reverence and respect.

About the Authors

Shoshana Berger, the former senior editor of Wired and editor-in-chief of ReadyMade magazine, is editorial director for the global design firm IDEO. B.J. Miller is a hospice and palliative care physician at UCSF Helen Diller Family Comprehensive Cancer Care Center.

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