What Happens at the Time of a Life-Threatening Diagnosis
Emotional Roller Coasters and Coping Mechanisms
Often a routine physical exam or test reveals new diagnoses. An illness that leads to more tests can lead to a new diagnosis. This is entering the area of the unknown. Most of us fear the unknown and that which we cannot control. The emotions we feel are fear, anger, unease, dread, worry, denial, and mental disorganization. After receiving a diagnosis, some people imagine the worst-case scenarios.
The shock of the diagnosis stops our ability to hear and absorb information. As human beings, shock sends us into a fight or flight mode. People panic and make hasty or premature decisions. The misinformation, fear, and assumptions about the prognosis make it important you have someone to support you when getting test results. Audio tapping the visit with the doctor is advisable so that all family members hear the same thing. This is the time to slow down and make a plan. Be assertive in questioning health care providers. Be pro-active in searching for information from a number of different sources.
With unknowns, life focal points change. Fragmentation, stress, and fatigue accelerate illness. The reaction to the unknown may depend on the coping style and/or level of fear. It is important to seek help and understand how reactions from others may change. Everyone has his or her own coping style. It is important to know and use what works during the time in the unknown. What is your coping style?
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Coping Mechanisms |
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| Poetry | Painting | Talking | Music |
| Research | Activity | Movies | Making Scrapbooks |
| Sewing | Meditation | Praying | |
Everyone needs an advocate. That person can speak in support and go to physician visits. They can help sort things out. This advocate may be a family member, a spouse, a friend, a spiritual leader, or a group. Who is part of your support system? Who can you depend on in time of need? Who gives you strength and hope?
Knowledge is Power
More information equals better coping and more control. Sources of information include the doctor, the hospital, libraries, Internet, family and friends, brochures, support groups, and national organizations.
Ignorance is NOT bliss!
Treatment options are dependent on the diagnosis. There are many alternative and complementary treatments advertised today. It is important to discuss these with the physician before adding other treatments. Some will choose complementary or alternative treatments over medical treatment. You must become knowledgeable and FULLY informed of all the risks and benefits of ALL treatments before making a plan.
Communicating with Health Providers
A plan, which can change, helps to maintain control and keep the mental disorganization at bay. Actively visualizing the illness and setting stimulates questions and motivates one to seek the answers. It is OK to ask for a second opinion. Seeking a second opinion is NOT being disloyal to your physician.
Despite attempts by the medical profession to use lay terms in discussing a topic, medical terminology often sneaks in and leaves the person lost, confused, and in the dark (back to the time of unknowns). Knowing some of the terminology in advance provides a means to communicate with the medical profession and in translating the information to family and friends. It also provides you with a higher level of power and confidence in the situation.
Ask your healthcare provider and medical facility for a copy of their patient rights and responsibilities. Read, know, and follow these rights and responsibilities.
Asking questions of the medical profession is the most important tool in the toolbox. These are questions to ask about the disease:
 | How will it affect my life? |
| What are the treatment options? |
| How much does treatment cost? |
| How it will cause death? |
| How much time do I have? |
A person accumulates a lot of information during this phase. Keeping a 3-ring binder with the information organized helps. Writing the questions down before a physician visit is important to remember them. Journaling is one way to keep discussions with different providers straight. Journaling also provides a chance to record emotional reactions. Putting information on paper is a coping mechanism for many. It relieves stress of remembering everything and provides an outlet for emotions, which may hinder healing. This involves simple entries with dates, whom spoke to, tests, appointments, medication, questions, and answers. Some journals may be more elaborate. They are all individual to the person.
Cultural Differences
Cultural background affects the reaction to different situations. Everyone reacts differently depending on his or her cultural beliefs, values, and communication styles. Some common reactions are questioning, fear, anger, and psychological pain. They may express these reactions differently depending on cultural background. The meaning of healing may be different depending on culture. The plan developed must include consideration for cultural beliefs, customs, and practices. Some may hide the reactions according to their culture and others may be very demonstrative of emotions.
Some cultures depend heavily on elders, in whom they have great trust, for advice on directions to take. In some cultures, mothers or females make the major healthcare decisions. In others, the male head of household or the family unit makes the decisions. Some cultures have specific treatments or rituals for those that are ill. There may be specific holistic methods or herbs that are part of healing. There are cultures that believe discussing illness or death is taboo and sets the person up in a self-fulfilling prophecy. Each culture deals with time and space differently. Some cultures view the current life as preparation for transitioning to a new life – reincarnation.
Every culture has specific ways of handling everything in life. Although a person may be a member of a particular culture, they may or may not subscribe to all or some of the cultural norms. There are specifics regarding palliative care versus cure, assisted suicide, and euthanasia.
Spirituality
Every person is a spiritual being. When faced with a life threatening illness or any difficult situation, a person examines their belief system. It is important to know what the belief system is and how the person defines and expresses spirituality. It does NOT always include religion. Some express spirituality through prayer, meditations, traditions, rituals, silence, nature, family gatherings, friends, music, art, or journaling. Everyone finds a connection with their spirit in different ways. In turn, we express our spirituality in different ways.
Grieving
Everyone grieves each loss that occurs in life. These losses can be a job, a marriage, material things, health, or the loss of anything that a person values. Anticipatory grief is looking ahead at the future losses that are part of life. For the person with a life threatening illness, the diagnosis accelerates the anticipatory grieving. For a person who is living out their last days of life, they must say goodbye to every one, everything every loved or valued. They are separating from the past, present, and future.
Living with a Life-Threatening Illness
There are a number of ways to live with a life threatening illness. Some of these ways are:
| Talk about the illness, calling it by name. If it is cancer, call it cancer. If it is Parkinson's call it Parkinson's. Hiding it will not make life normal again. |
| Accept death as part of life and consider each day as another day of life. It is a gift from God to enjoy fully everyday. |
| Life is never going to be perfect. It certainly was never perfect before the illness and it will not be now. |
| Express your spirituality – it is strength not a weakness. |
| Learn to live with the illness not to die from it. Everyone is dying in some manner. |
| Put family and friends at ease. Discuss it with them. This includes the family not just the individual. If you do not want pity, do not ask for it. |
| Make all practical arrangements for advance directives, funeral, burial, and wills. Share these arrangements with your family so they will understand them. |
| Set new goals for yourself and realize your new limits. The simple things may provide the most enjoyment. |
Financial Concerns
Healthcare is expensive and no insurance or entitlement program fully pays for all treatment and care. In Alaska, travel out of the community or state for health care adds to that cost. Often seeking a second opinion or choosing a doctor as well as treatments may involve some travel. This is especially true for experimental treatments. The person must include travel along with meals and lodging into overall costs and the decision-making process.
Money affects the person’s choice of treatment. Some may choose to forgo or delay treatment because they do not have insurance coverage. Others may not have access to care in their community. Still others may choose to spend every penny on the latest cure and experimental treatments.
It is necessary to explore all possible financial avenues for payment of healthcare costs. It is important to keep this information in a binder for future reference. There are many options available to most regardless of income level. These options include: Medicaid, Miller Trusts, cashing in life insurance policies, etc.
Legal Issues
Many facing a life threatening illness are responsible for supporting other family members. Providing a safety net for them in the future is often foremost in a person’s mind. Completing a last will and testament is important to those dependents regardless of any diagnosis.
Many places can provide information, forms, and assistance with legal and financial concerns. Start with the doctor’s office, Fairbanks Memorial Hospital, Alaska Legal Services, American Cancer Society, national organizations, as well as all possible insurance options. There are formulas on the Internet to check eligibility for different programs.
