Book Summary – Dying Well (Peace and Possibilities at the End of Life)
Lacking a constructive vision of end-of-life issues or care is a matter in American society. They hate to think about death. They focus on how they can improve their live and make it better. the like to joke about death and hope it will lessen its grim impact and push away the all-consuming fear.
For most Americans, dying is a wretched experience for both the ill person and the loved ones who witness their distress. Dying people worry that they will become a burden, that the experience will rob them of their dignity and that their families will suffer, and their doctors will abandon them. Due to deficiencies in the United States’ health care system, including inadequate financing policies, many people who take a long time to die will become paupers, as will their families. Insurance companies and managed-care organizations often ignore hospice options.
“As people struggle to make the right decisions in the midst of the staggering crisis of an imminent, untimely death, startling opportunities may be revealed – opportunities for nurturing, honoring and celebrating the person departing.”
Up-and-coming medical professionals in the US receive little training in how to deal with the dying. Because of the medical profession’s curative orientation, physicians’ education often characterizes death as a compilation of serious medical problems. This problem-based, “collection of diagnoses” approach does nothing for a dying person’s emotional state. This adds up to a “confused, inconsistent and frequently ill-considered” approach to end-of-life care.
“If even the most emotionally robust among us will eventually die, it follows that a certain wellness in dying must be possible.”
A Profound Experience
Dying doesn’t have to be excruciating and scary. Death can be bearable. When handled properly, the process of dying can be a profound and even blissful event, “as precious as it [is] painful.” Some enlightened caregivers understand this profound truth.
Medical news supports the hope of a peaceful passing. Thanks to powerful medications, doctors can alleviate much of the pain associated with dying. No one has to die alone. The dying feel less anguish as death finally approaches if people are by their side.
“For the person, the process of dying…cannot be understood as simply a medical event.”
Death has luminous possibilities if doctors keep dying patients relatively free of pain, allowing ill people to feel confident that their loved ones are with them. In a manner analogous to other developmental crises of life – think of early childhood, adolescence, young adulthood, midlife, and old age – as death nears, a person can grow, becoming more whole and more complete emotionally and spiritually. During the stage of life we term “dying,” many people can grow individually and together.
“Dying of a progressive illness offers precious opportunities to complete the most important of life’s relationships.”
Dying people can experience positive, uplifting and healthy emotions even as their bodies deteriorate. If the patient’s family and medical care team approach dying with wisdom and understanding, it can be a time of growth and serenity. A person can die well; that is, experiencing a sense of well-being, while fully knowing that they are leaving this life.
Loved ones must commit to the final welfare of their dying relative or friend. They must maintain the “highest expectations” that the experience of dying will be as free of pain and worry as possible. The ultimate question family members should ask is, “How can we make sure that [the person dying] is getting the best care possible?”
“When a dying person and a loved one come to feel complete between themselves, time together tends to be as full of joy and loving affection as sadness.”
Many doctors and nurses know little about the particulars of end-of-life care. Most end-of-life care training takes up only a few hours of their medical education. Instead, medical schools emphasize curative medicine. This problem-based, cure-at-all-costs approach adds problems for dying people. To a significant degree, the provision of quality end-of-life care depends on the palliative-care knowledge and expertise of the “doctors, nurses, hospital…nursing home…or hospice program involved.”
“Physical suffering can always be alleviated. People need not die alone; many times the calm, caring presence of another can soothe a dying person’s anguish.”
The patient’s professional team members should align the care they provide with the wishes and goals of the patient and the family. Advocacy is essential. Relatives must scrutinize their loved once’s doctor’s qualifications. Otherwise, the person dying may end up receiving bad care. Loved ones must insist that end-of-life care professionals meet their high expectations for the dying person’s care.
Finding superior institutions and trained medical professionals can be difficult. Many institutions and professionals don’t pay enough attention to alleviating pain and preserving opportunities for dying people to live as fully as possible through the end of life. As a family member – or a patient – your primary goal should be to ensure the best care.
“The time of dying is a dark, foreboding place – the end of the road, beyond which lies an unknown, terrifying terrain.”
To ensure the finest care, consider these scenarios:
“In America, you have a greater chance of dying in pain if you don’t speak English, and if you are black, Hispanic, poor, elderly or a woman.”
- Question– “My sister has advanced breast cancer, and no one in the family is talking about the fact that she’s getting weaker and weaker. How do we begin to talk about dying?” Answer – Dying is part of the natural order. Everyone dies. Don’t be embarrassed to discuss this subject.
- Question– “Mom had a massive heart attack and is in a coma. How can she possibly die well?” Answer – Since you can’t know for sure, assume your mother can hear what you say. Tell her you love her. Give her simple gifts such as “music, a gentle massage with fragrant oil, warm bathing and hair-brushing.” These kind demonstrations of love will make your mother more comfortable during her final days.
- Question – “My mother and stepfather live in a distant state, and I have just found out that he is seriously ill and probably dying. How can I help him to die well?” Answer– Stay in regular phone contact with your mother and stepfather. Send greeting cards. Offer any assistance that you can provide. If you can, visit your mother and stepfather. Don’t wait until it may be too late.
- Question – “Mom has cancer, and she’s having a lot of pain despite the Darvon and ibuprofen the doctor is giving her. What else can be done?” Answer – Your doctor must determine what causes the pain. He or she should be a capable professional who truly cares about your loved one’s well-being. The doctor should ask the patient, “Where do you hurt? Is the pain constant or does it come and go? What makes it better? When is it worse? What type of pain is it: Sharp? Shooting? Pressure-like? Achy? Burning? Or boring? What happens when you are hurting? Do you get short of breath? Sick to your stomach?” If the doctor isn’t asking these questions, find another who will.
- Question – “Mom is very old and becoming progressively incapacitated…My sister and I…can’t provide all the care she needs…None of the nursing homes are places we could have our mom live. What should we do?” Answer – Nursing home care can range from excellent to abysmal. If you investigate fully, you will be able to locate a nursing home that will be the right place for your loved one.
- Question – “I have cancer, and I am not ready to talk about dying, but my family bought me this damn book! I feel like they’re pushing me into the grave. Why can’t they just leave me alone?” Answer– Even if you’re dying, your family will continue to care about you and you will remain a part of the family. This means accepting the “give and take” of the relationship. If you truly aren’t willing to listen to your family members about dying, be up front and tell them so. You have a “right to be left alone.”
- Question – “My friend has advanced AIDS and has been asking me to help him plan his suicide. I love him and want to help him, but I can’t bear to talk about suicide. What should I do?” Answer – It’s good that your friend trusts you enough to confide in you. Do everything you can to encourage such openness. Your bottom line should be that your friend has the absolute right to end his or her life on purpose. Most people with AIDS can just stop taking their medications; usually, that is all it takes to hasten death.
- Question – “My child has leukemia. The treatments keep getting more aggressive. I hate seeing him in such distress and would rather lose him than watch him suffer. What can we do?” Answer – Childhood leukemias are largely amenable to aggressive treatment. So halting such treatment almost surely will be a death sentence for a child who otherwise might live. As for the pain your child suffers, check with your doctor to ensure that he or she prescribes adequate medications to control the pain. Ask for a palliative care team to get involved.
The attitude of conventional medicine is that doctors and nurses must go to extraordinary lengths to forestall death, no matter how difficult and expensive the treatment may be. Under this system of thought, curative or life-prolonging options are the only viable choices. Many of the dying and many medical professionals don’t know that this approach to advanced illness isn’t the only option. Palliative care and hospice programs are attractive alternatives that focus on dying well.
“The decisions people make to complete their dying days, or to help someone they love complete a life, are rarely easy.”
In the US, after heroic efforts to keep a gravely ill person alive fail, the trend now is toward the concept of physician-assisted suicide. While this concept ostensibly falls under the rubric of advocating for dying patients, the debate about it includes fear of giving the dying a message that their lives are “no longer of value.” Yet “there are many shades of gray.”
“Ultimate responsibility for end-of-life care must remain with the dying person and the family.”
The potential legalization of assisted suicide [update: now legal in six states] raises grave equity issues among certain groups of gravely ill people: “children, the mentally retarded or developmentally disabled, the mentally ill, people with Alzheimer’s disease or other acquired dementia, and those who are alert but paralyzed.” Patients in these groups can’t responsibly or fully participate in making decisions about their potential assisted suicides.
Proponents of assisted suicide once excluded these types of patients, but increasingly consider access to hastening death one of their “rights.” Whatever one thinks of intentionally ending life, it is essential that we provide the best care possible to alleviate suffering and improve the well-being of any dying people person.
“The idea of dying well is foreign to many people, families and patients as well as medical people, because of [a] grounding in the factual, impersonal side of dying”
Dying people who are in pain can embrace viable options beyond assisted suicide. Often, when people suffer long illnesses, they lose their appetite. This is natural, a sign of the “wisdom of the body.” Not eating can be among “the most peaceful and comfortable ways of dying.” Numerous powerful medications and treatments are available to alleviate even the most severe physical pain. Enlightened loved ones who learn how to care for a dying person can ease the “experienced loss of meaning” and the feelings “of impending disintegration.”
“Someone who is dying, like the developing child, goes through stages of discovery, insight and adjustment to constantly changing circumstances.”
Death Less Dreadful
How can you ensure that a loved one’s death isn’t horrible? You need sophisticated clinicians and palliative care specialists with specialized expertise about ideal ways to treat the dying. Any physician can learn to be an effective end-of-life care professional. Americans must put aside their current view of death as solely a terrible event that carries “inevitable emotional distress and barely avoidable physical suffering.” Instead, they must learn to regard death as the logical and completely natural culmination of a full life.
People must begin to regard the provision of excellent end-of-life care for their loved ones as a basic human right. Such care involves some customary elements, including shelter for the dying and assistance with personal hygiene, eating and drinking. The dying person needs loving companionship that sends the message that his or her life still matters.
“Even as they are dying, most people can accomplish meaningful tasks and grow in ways that are important to them and to their families.”
In some cases, death provides a special opportunity for the dying person to reconcile with friends and family members if their previous relationship suffered strain or even ended.
A Sacred Moment
In someone’s final days, the loving caregiver bears essential witness to the value of that person’s life, recognizing and acknowledging his or her core identity and fundamental dignity. Celebrating the dying person’s life can be hugely, memorably significant not only to the person, but also to all who love him or her. Enlightened, kind, thoughtful and loving end-of-life treatment elevates death to something worthy and even – in the words of some loved ones as they stand watch with the person dying – something truly sacred.