Posts Tagged ‘dying’

Coming to Terms with Fatal Disease: Talking with your Doctor

Friday, October 30th, 2009

The Doctor by Luke Fildes

The Doctor by Luke Fildes

If you do not die suddenly from an accident, heart attack or stroke, chances are you will die a slow death from disease or simply from aging. Unfortunately, in the latter case, doctors are well trained in every possible aspect of saving a life, but little on how to treat death and dying. So, if you are diagnosed with a fatal or chronic condition, how do you talk with your doctor effectively?

When you are diagnosed with a fatal illness or chronic condition, try to discover as much as possible about the medical facts about your condition. Most doctors are overworked, and many lack the skills to offer counseling for the emotional aspects of dealing with your illness. But, most doctors can provide facts about your condition. Additionally, you can use other resources, as noted below, to learn more about how to deal with your condition emotionally.

The following questions were gathered from Dr. Daniel R. Tobin’s book, Peaceful Dying, a step-by-step guide to preserving dignity, your choices and your inner peace in death and dying. These questions were designed to get as much information from your doctor about your condition as possible:

  • What are my treatment options?
  • What is my prognosis?
  • How long do you think I have to live? (while there is no surefire way for a doctor to predicit how long you’ll live, you can get a general idea of the life span of most people at your stage of disease)
  • What are the side effects of the treatments you are suggesting?
  • How much time do I have to make up my mind about which treatments to use? How will that time affect my treatment?
  • What treatments exist outside those offered by traditional Western medicine and where can I research such alternatives? (most doctors do not know much about alternatives, so you may have to search a little further to find answers to this questions)

Some tools you can use to find more answers include:

  • Get a second opinion and answers to your questions above.
  • Read more about your disease in books (written within the past five to ten years for the most updated information).
  • Join support groups for patients with your disease, and encourage your family members to do the same.
  • Surf the Internet for more information about your disease and treatments for that disease.
  • Seek counseling if needed with a specialist who understands grief, death and dying. This counseling can be invaluable for both you and your family.

When you are diagnosed with a fatal or chronic disease initially, the information you gather may be far different than information available to you as your disease progresses. Be sure to stay on top of new developments in your disease, as you never know when something might occur that either could ease your suffering or prolong your life.

In other words, while your doctor may be the best expert in his field, he may not know all the answers to your particular situation. You are responsible for your life and your death in many cases. So, take charge and live your life with dignity.

On a final note, sometimes diseases come on quickly and can incapacitate you without warning. Therefore, it might be wise to share this information with your family so that sharing in the responsibility becomes a family affair. When family members understand how to recognize and help treat H1N1, for instance, that knowledge may help to save a family member’s life.

Open Courseware on Death and Dying

Thursday, June 18th, 2009

Do you want to learn more about aspects of death and dying, but don’t want to pay an arm and a leg for a college course? Take advantage of open courseware, then. These courses, offered by major universities, government entities and businesses, are courses offered online. While they offer little to no credit, they’re free and you can learn at your own pace.

The following short list of open courseware about death and dying provides some examples of what you can expect to find. The list is in alphabetical order, and we do not favor one course over another:

  • Death: This course examines a number of issues that arise once we begin to reflect on our mortality. Are we immortal, or does life really end at death? Discussions on suicide, attitudes toward death and other issues are offered by this Yale course.
  • Health Across the Life Span: Frameworks, Contexts, and Measurements: Johns Hopkins provides many excellent courses on health, and this one is an example. This course introduces and examines the basic principles that guide growth and development and the health of individuals across the lifespan, from the prenatal period through senescence.
  • Health Issues for Aging Populations: Another course from Johns Hopkins that introduces the study of aging, its implications for individuals, families, and society, and the background for health policy related to older persons.
  • Human Growth and Development: While addressing health care professionals, the layman can learn much about various developmental tracks that follow a person from birth to death.
  • Living with Death and Dying: The Open University provides a course that explores how knowledge and beliefs about death and encounters with death affect peoples’ lives.
  • Managing Long-Term Care Services for Aging Populations: This course reviews care and service systems from the unique perspective of an aging population, including the physiological and psychological changes common among seniors.
  • Medical Terminology: While not dealing with death and dying specifically, this course can help anyone (including nurses) understand more about the terms used by those in the healthcare profession.
  • Moral and Ethical Principles in End-of-Life Care: Another Open University course that addresses issues in hospice, or palliative care.
  • Moral Problems and the Good Life: MIT offers this course, which includes readings and lecture notes. Topics include: euthanasia, gay marriage, racism and racial profiling, free speech, hunger and global inequality.
  • Transitions into Residential Care: The Open University offers this course, which considers working with people in group care and residential settings.

What Do Dying People Need?

Tuesday, November 18th, 2008

What Dying People Need

One of my aunts died last year, and – fortunately – my uncle was willing to talk about her death. I learned from him how she viewed her world as she was dying. I also learned about what she needed to leave this world in peace.

Although the information below was specific to my aunt, some items in this list probably are universal. And, although she didn’t die suddenly and had time to finalize many wishes, this list can serve as a reminder that many individuals do die suddenly, with little time to accomplish goals. Therefore, this list can serve as a template for anyone who wants to leave a promising legacy.

  • Settling Finances: If you’ve been frugal during your life, this goal might not be difficult to accomplish. If your finances are in disarray, you might take a look at how you can straighten them out so that you don’t leave behind problems for loved ones. Find a financial adviser to help you with your goals, and learn more about how to leave money to your beneficiaries. The best time to accomplish this task is when you’re feeling healthy.
  • Find an Advocate: My aunt’s husband was her advocate, as he was able to represent her to her doctors and hospice care workers when she couldn’t represent herself. The advocate needs to know your wishes for treatment, how you want to end your days and to talk for you if you are unable to communicate. This person will enable you to manage any pain, to support you at the end of life and to help you die with dignity.
  • Establish an Ethical Will: In an ethical will, you can say how and where you want to die, and under certain medical circumstances. This will enables your advocate to argue your case with doctors and even with lawyers. In this will, you can describe your funeral (which you can pay for in advance) and leave last messages (your financial will manages your bequeaths).
  • Ignorance is Not Bliss: My uncle and his wife learned everything they could about her illness so they could prepare for the future. He went so far as to learn about the signs of death from her hospice care so he could recognize when the end of her life was imminent. To say that this made the end of her life that much more intimate to them both would be an understatement.
  • Make Amends: My aunt was feisty. There were some people she could forgive…and forget totally. Some people aren’t that lucky. If you have battles that keep you awake at night, you might want to settle them now. If you’ve hurt others and you know about it, ask them how that hurt can be healed. If others have hurt you, talk with them about it and be gracious in your responses. The point is to leave this life with dignity and in peace.
  • Reach Out: Professionals are available to help you and your family members talk about death and dying. These guides can be found in funeral homes, hospices, psychology offices, churches and hospitals. They have been trained to know what the dying person needs, including hope, faith and encouragement within the context of the situation, lessons about stress and grief management. Death, no matter if sudden or slow, is a powerful tool that can be wielded by the dying and mismanaged by the family. Guides can help to cut through barriers to help those who want to move past the anger and sadness that can permeate their lives.
  • Safety and Support: A dying person can feel very vulnerable, and safe environments are tantamount to their well-being. These environments are physical, but they also can be emotional and psychological – they need to feel safe to discuss sensitive issues and to reveal raw emotions with loved ones and with others. Some cancer patients and their families, for instance, can find solace in groups filled with individuals with similar illnesses.
  • Physical Care: My aunt, even in the last stages of her illness, wanted to feel “whole” and strong. She would take walks and try to keep up with chores and her daily routines. Her husband knew not to interfere. When she became bedridden, she finally allowed him to take on her part of the work. Part of her insistence in carrying on “as usual” was to face death with pride. On the other hand, physical activity helped her to maintain a positive attitude, as these activities helped her to avoid thinking about the end of her life.

When my aunt did become bedridden, my uncle stopped everything except the daily arrival of the hospice caretakers. My aunt wanted to die at home with her husband, and everyone respected her wishes. My uncle stayed by her side for three nights and days until she died.

My uncle is doing well today. I have no doubt that he has his sad moments, but I believe that the steps that he and his wife took to help her transition from life to death helped them both to face this trial with pride and love. I hope they help you as well.