Quality of life and serious illness

When faced with a serious illness, we are often called upon to evaluate core values and beliefs. What makes life worth living? Is there a quality of life that is unacceptable?

As a family caregiver, you may be asking yourself these questions. Very likely the person you care for is also, although he or she may not be talking about it.

Values and priorities
The key to living well, at any time in life, is to identify what it is that you value most. What is important to you in terms of

  • your physical well-being?
  • your mental balance?
  • your spiritual health?

For people with a serious illness, these questions become a daily concern. The answers will certainly inform decisions about treatment. They will also affect decisions about life support and end-of-life wishes.

Consider these issues with your loved one. And if they have meaning for you in your life also, that may be one of the gifts of giving care.


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How meaning and purpose change

People struggling with a serious illness often come to measure their days in terms of quality of life rather than its quantity.

Not much stamina
As the disease advances, your loved one may not have much stamina. He or she may not be able to fulfill the roles that were meaningful in the past. Career, friend, parent, spouse. All require energy that may no longer be available.

Still a lot to do
That said, there is still much to live for. Even the dying have wishes and goals. Tasks to complete. Borrowing from the work of noted palliative care physician Ira Byock, these tasks can be described as follows:

  • Completing one’s worldly affairs
    This might include arranging a will or trust to distribute any assets. Your loved one might want to write an advance directive outlining his or her health care wishes at the end of life. There may come a time when it’s appropriate to make closure with community groups and activities outside the ring of intimate friends and relations.
  • Reviewing one’s life
    The person you care for may wish to write a memoir of sorts, telling his or her life story. This can be dictated into a tape recorder as strength and time allow. A friend or possibly even a hospice volunteer can type it up. This is an opportunity to acknowledge and celebrate accomplishments and reflect on challenges. Some people choose to make an “ethical will” describing the lessons they have learned and passing on words of wisdom.
  • Forgiving oneself
    In the course of a lifetime, all of us will have made mistakes. During a life review, your relative may identify things he or she can yet do to make amends. Seeking forgiveness can be very healing. Even if that’s not possible, acknowledging regret can help. So can writing a letter. It doesn’t have to be sent. If the person involved is long gone, writing a letter still helps in the process of forgiving oneself.
  • Resolving family relationships
    A part of making closure with the intimate circle is asking for forgiveness from some and likely extending it to others. When faced with the possibility of never seeing each other again, family members often realize that the relationship is far more important than any resentments from the past.
  • Accepting interdependence
    Self-sufficient as we like to be, the fact is we all need each other. None of us is an island. In the course of living, your loved one has most likely helped others. In the course of life’s end, he or she will most likely need help. An important lesson in the final weeks and days is to learn to be dependent and accept help graciously. This task will be easier if your relative can draw dignity and self-worth from areas other than his or her ability to be self-sufficient. For instance, there is great value and strength in the ability to give and receive love or the ability to share laughter.
  • Approaching transcendence
    As people face the fact of their mortality, they often find solace in spiritual beliefs. They connect with the concept of a Being or Entity larger than themselves. Your loved one may come to an understanding of the fundamental unity of all life. He or she may talk positively about merging with this larger Essence.

Not everyone will go through these steps of letting go. At the least, these passages can remind us that there is more to dying than just the passing of the physical body.

The impact on you
People who care for a terminally ill person often find this letting-go process is personally illuminating. It points out that life is short and brings up important questions about living:

  • Why wait until I am dying to extend forgiveness?
  • Why focus on what isn’t working when there’s so much to be grateful for?
  • Why put off those things that truly have meaning to me?

Coping with a serious illness calls all involved to reexamine their priorities. Family members and the person who is ill often discover that the disease can bring them closer. Their time together can be filled with deep love, growth, grace, and joy, even if the condition is terminal.

What gives your loved one meaning or purpose right now?
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What makes life worth living?

Clarifying what your loved one cherishes about life will enable you to focus on those qualities. And if you ever need to make life support decisions, it will help you tremendously to know what he or she values most.

Some questions to discuss:

  • Difficult symptoms
    Which symptoms are the most bothersome? Perhaps they can be managed more effectively.
  • Favorite activities
    What favored activities have been limited by the illness? Perhaps adjustments can be made so your loved one can capture the qualities of those activities even if he or she cannot perform them as before.
  • Relationships
    How have relations with his or her friends and family changed because of the illness? Perhaps talking about it could clear the air for closer interactions.
  • Worries, fears, concerns
    What is distressing to your relative? Is there anything that would be worse than dying? He or she may not feel comfortable discussing these topics with you. Rather than bottle them up inside, however, who would be a good person to speak to about them?
  • Spirituality
    What does your loved one’s spiritual path offer in terms of support? Are there rituals to assist with health challenges? Find out about people you can call upon to help your relative access this support.
  • Meaning
    What gives life purpose? Your loved one might find it useful to reflect on what has been gratifying so far. Identifying lessons learned, and acknowledge shortcomings, can shed light on meaningful activities.
  • Wishes and goals
    What does your loved one look forward to? Even people who are terminally ill have goals or wishes. Perhaps there is an event he or she is hoping to attend. A wedding? A graduation? Maybe your relative would like to visit an old friend. To wrap up a special project. Spend more time with family.
  • Daily joys
    We all have little things that cross our path each day and bring a smile. What simple pleasures does your relative enjoy? The birds at the feeder? A particular type of music? Watching the sunset? These are cues for things you can do to make a challenging day better and a good day great!

Learning more about your relative’s values will help you make decisions about treatments if your loved one cannot speak for him- or herself. At rock bottom, what is the minimum that your loved one would require to make life worth living? Are there circumstances, from your relative’s point of view, that make the quality of life so low that it is worse than dying?

What would your loved one say are the essentials for a good quality of life?
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