The Needs of the Dying (David Kessler)
David Kessler has worked for decades in hospice, palliative care, and with grieving families. He writes openly and honestly about death, how to talk to those with life-challenging illness, how to grieve, and what to expect when death is near. Although The Needs of the Dying (formerly The Rights of the Dying) is not entirely secular, and Kessler believes in the soul/afterlife, this book still contains plenty of useful information for skeptics.
OVERVIEW
Kessler provides a practical list of the needs of the dying, with each need then fleshed out in dedicated chapters. I think the broadest takeaway is that what everyone desires in life, so too we desire near death: to be treated as a human being, to have hope, to find peace, to maintain our dignity. These needs don’t vanish as we age or face life-challenging illness (though loved ones and doctors may behave as if they do).
Those nearing death require communication: to express themselves honestly, to participate in decision making, and to have their questions answered truthfully. The dying should be free to choose their medical goals, whether they be “cure” or “comfort.” Their pain should be managed and they should be treated by sensitive, knowledgeable people. They may seek spirituality and express their feelings about pain, death, or mortality – the role of caregivers and medical practitioners is to listen and grant them autonomy to their thoughts and wishes about death.
Above all else, those who are dying or facing life-challenging illness require love: to be treated with compassion, to be cared for, and to not die alone.
WHAT NOW? (actions for mortal atheists)
The most important action is that you read this book, to be frank. Whether you are the one at the bedside or the one in the bed, it’s full of practical information. Here’s what stood out for me, and while I’ve separated out actions/advice for caregivers and those who are dying, in the end they are interchangeable. This is advice for everyone.
Advice/reminders for caregivers
· Everyone is a whole human being right up until death. When you look at a dying person you may only see disease, or impending death, but to them they are still themselves. Life ends at death and not a moment before. See beyond their illness. See the whole person.
· It’s inhumane to withdraw companionship. We are social creatures who crave love, friendship, and intimacy – this doesn’t change simply because someone is nearing death.
· Don’t exclude the dying from conversations about their care or their death. Never hide information from them.
· Those who are dying still have stories to tell; they want to participate in their life and in yours.
· What “hope” is may change as someone nears death, but never take away whatever that hope is. Near the end there is hope and fear – without hope you are left only with fear.
· You don’t have to hide your feelings from someone who is dying. Relationships remain a two-way street. More so than at any time before, it is critical that you listen to them, no matter how painful or uncomfortable their words may be.
· Everyone wants to express their feelings and emotions. This is especially true when people are dying. It’s important for them and for us. Don’t erect any barriers to intimacy.
· If your loved one isn’t ready to talk about death, don’t force it.
· Let children be present. It’s okay to talk with them about death. Kessler says “if children are old enough to love, they are old enough to grieve.”
· Help loved ones maintain their dignity and peace. Resist the medical system’s tendency to depersonalize and dehumanize (if that’s applicable to your loved one’s situation).
· “At the very end, when there’s nothing more to do, just say ‘I can’t stop your pain. I can’t make it go away. All I can do is sit here. So I’ll sit here. Someone who loves you will sit here and hold your hand to the end. You won’t be alone.’”
Advice/reminders for those who are dying
· Ask yourself what you want as you enter the final phase of life. Do you want aggressive treatment? Do you want to let nature take its course? Do you want someone else to make decisions about your care for you? Whatever you decide is correct for you. Be clear about your wishes with your family and your doctors. You can change your mind as much as you want. Your latest decision is the only one that counts.
· Understand that technology can prolong the length and depth of suffering. Think about how you want to spend your remaining time, and honestly assess if medicine will help or hinder your goals.
· Death is painful, just like birth. It is hard work to die. Work with doctors to manage pain and have a plan, but know that having pain at some point is unavoidable. Some pain may have to be endured.
· Insist that you be kept informed and allowed to participate in decisions (if that’s what you want). You are allowed to ask hard questions.
· Whatever your feelings or emotions are, they are correct. You may feel peace or a sense of completeness. You may also feel numb or depressed. It may change minute to minute. There is no “right” way to feel.
· Remember that dying is not failing. If you are dying, there is nothing to “fix.” You are not broken. Accepting our mortality is the ultimate act of self-acceptance.
· Kessler describes five stages of spiritual reconciliation as people approach death, which after being stripped of mysticism are still accessible and useful for secular folks: 1) expressing emotions, 2) taking responsibility for your whole life, reconciling the part you have played in it and the lives of others, 3) forgiving, 4) accepting, and 5) being grateful.
I would also strongly recommend everyone read chapter 8, What Death Looks Like. Knowing what happens in the final days, hours, minutes before death is empowering information for caregiver, practitioner, and patient alike.
IN SUM
Is this book entirely secular? No – there is a chapter on spirituality (not the secular kind!), an afterword about life after death, and a few references to the soul/surviving bodily death.
If you had to describe the book in one sentence? a trove of information for those who are dying or have loved ones who are dying.
Who should read this book? Everyone.
I enjoyed Kessler’s views on lives that feel “incomplete.” Contrary to Andrew Stark’s “The Consolations of Mortality” (which weren’t consolations at all), Kessler does feel that there’s comfort to be found no matter how short or seemingly incomplete a life may have seemed. To Kessler, life can only be defined by birth and death. In this way, any human who is born and dies has a complete life. He says, “there may be things we wish had happened – more time, more opportunities, and more experiences, but their absence doesn’t mean that a life was incomplete.” I find this perspective comforting.