Facing a terminal illness takes courage, strength, and the love of any and all who can be gathered around. Whether you or a loved one is dealing with terminal illness, please remember that you are not alone and The Band is here to offer love, support, and a helping hand.
"Darkness cannot drive out darkness, only light can do that." -The Rev. Martin Luther King, Jr.
What Is Terminal Illness?
A terminal illness is a disease that is incurable and untreatable, and ultimately will end in the death of the person within a relatively short period of time.
It is common for people who have been diagnosed with a terminal illness to first experience a brief period of disbelief, after which they might feel shock, anxiety, anger, despair, and guilt; they may attempt bargaining and even humor as means of dealing with the information. Most people with a terminal illness then experience a period of mild to moderate depression, which may be eased by supportive services and family.
At some point, many people report experiencing an acceptance of their diagnosis. As with all who experience the stages of grief, different people react in a variety of ways, some cycling quickly through and moving into acceptance, while others become stuck in one phase or another.
Being Yourself:
Having a serious illness is very stressful. When facing the end of life, a person must learn to face and cope with emotions related to the circumstances and timing of their death. In addition, many terminally ill individuals may feel some sort of responsibility for the feelings of those around them -- their friends, loved ones and even caregivers -- who are also coming to terms with an impending loss. Terminal illness is not simple or straight forward, especially when emotions are high.
While the ill individual may not be able to control the progression of their illness, they do have the right to make decisions about treatment options, lifestyle changes, caregivers and end-of-life orders whenever possible. Every person has a right to dignity and respect while seeking medical care.
Find an Advocate:
Being informed that one has a terminal illness can, understandably, be quite a shock. The time immediately following diagnosis may feel unreal, blurry and even surreal for the individual. If possible, a well-chosen friend or relative who “has your back” and can offer a shoulder to lean on can ease the stress and aid in taking in information at such a time. Where the newly diagnosed person may not be able to concentrate on the initial information being divulged, a support person often has the presence of mind to ask questions on the person’s behalf.
Many healthcare agencies can help with locating a patient advocate or may provide a palliative care team to assist terminally ill patients in obtaining the information necessary to make decisions as well as help with emotional and spiritual support.
Seeking a Second Opinion:
In the case of a diagnosis of a terminal illness, a second opinion is important. Such a consultation should confirm a correct diagnosis and prognosis, and widens the scope of information available to lend insight about the illness.
Regardless of the situation (parenting methods, career, school, health), friends, family members and professionals all have opinions and advice to offer a loved one. In the case of a serious or terminal illness, this happens more than ever, but it's important to remember that an individual has the right to make decisions that are best for them regarding the management of their care.
Checklist for Managing Care:
Find a doctor who shares your beliefs. It is important to have good rapport with a general practitioner. That person acts as the gateway, helping you to navigate the healthcare system. They need to demonstrate that they can provide information, hear and act upon your priorities and concerns, and support your overall decisions.
If your current doctor does not meet your needs, consider finding a General Practitioner who will. While you may worry about hurting the doctor’s feelings, it is extremely important at this time in your life to feel heard and get the answers you need. Your feeling of security and trust, and those of your family, are more important than the physician's and you deserve to find care that feels right.
Explore your options. Your doctor or non-profit and support groups are sources of information for how to best treat your illness. When facing end-of-life decision making, hospice, palliative care teams, and community groups can also offer appropriate and timely support and information.
Choose treatment that is best for you. Navigating the medical system and accompanying insurance services can be daunting and confusing. And of course, specialists abound in any given field of illness. People in support groups, community services and non-profit agencies can offer guidance and information with regards to the specialists and treatment options best suited to your preferences, illness and needs. If necessary, a patient advocate can be useful in helping to get your needs met by otherwise inflexible and convoluted insurance policies.
Alternative therapies can treat and offer comfort that traditional treatments may not be able to provide. These include:
- Nutritionally based programs
- Acupressure
- Acupuncture
- Other holistic approaches
Note: Conventional doctors may express concerns about the risks of choosing alternative medicine over the conventional (scientific) approach. The fear is that, should an individual choose to follow a non-medical regime as their first course of action, the disease could progress to the point where conventional medicine will no longer provide solutions to cure the disease or prolong life. The flip side to this concern for some is that conventional medical treatments come with their own risks of side effects and injury.
Both are real concerns, the first especially for illnesses that have shown to respond positively to existing treatments. Ultimately each individual must decide on a course of action that is best for them in battling their illness. One common option is to start with a traditional medical approach alone or paired with complimentary therapies, and explore the alternative medicines when no options remain.
Complimentary therapies are meant to ease symptoms and/or side-effects of treatment and are used in conjunction with traditional medicine to support the body’s natural abilities to heal and enhance a feeling of well-being. They include:
- Nutritionally based programs
- Acupressure
- Acupuncture
- Holistic Approaches
- Hydrotherapy
- Aromatherapy
- Hypnotherapy
- Reiki
- Reflexology
- Massage therapy
Caregiving:
Often toward end of life a person is no longer able to take care of day-to-day responsibilities. Care may fall to a loved one, and might involve helping with childcare, medications and eating, as well as physical administrations for someone who is unable to meet their own basic needs such as bathing, toileting, and preventing bed sores.
Hospice, which specializes in care for the dying, can provides services either in the home or in a care facility when a loved one is not able to provide everyday care.
Respite care is also available in many places to prevent caregiver burnout.
A “Good” Death:
Of course there exist a variety of reactions to terminal illness. Many people, once they reach the acceptance stage, use their time to plan and prepare for their death. This can help ease the stress and provide comfort for both for the individual and their loved ones. Planning for death may include:
- Pain and symptom management
- Education of death and aftermath, especially as it relates to decision making
- Completion of goals or resolving past conflicts
- End of life decisions, including the steps desired to prolong life. These options include:
- The right to be resuscitated versus 'Do Not Resuscitate' orders (and the level of a DNR order)
- The choice to refuse food and fluids, and the techniques to give comfort with such a choice
- Preparing for practical issues (settling affairs, writing or revising a will, stating preferences for memorial)
Wherever you are in the process of coping with your own or your family member's terminal illness, please know that The Band is here for you.
Related Resource Pages on Band Back Together:
Explaining Death to Children - Birth to Age 3
Talking to Children About Death
Talking to Teenagers About Death
Additional Resources for Terminal Illness:
Counseling information for terminal illness patients.
Hospice Foundation of America (HFA) provides end-of-life care resources for patients, families, and professionals.
Growthhouse.org provides education about life-threatening illness and end of life care. According to their site, "Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration."
The Mayo Clinic staff have written many useful articles on end of life care from the patient, family member, and professional perspective, including the helpful piece entitled Supporting a Terminally Ill Loved One.
The UK-based website If I Should Die provides practical information for planning surrounding the end of life and coping with terminal illness for individuals and loved ones.
The UK-based Terminal Illness website offers articles to help with coping with impending death.
Cancer.org provides a resource for helping children cope.
Make a Will online – No matter how old you are, you should have a will. Your wishes need to be laid out and your family shouldn’t have to struggle wondering what your plans for your assets would be. Make a will online. They are very inexpensive but are valuable in case of your death.
CaringBridge.org offers free websites for families and patients to stay connected and up-to-date on health status during difficult health challenges.
GetPalliativeCare.org has an extensive listing of websites that can also provide helpful information for terminally ill persons and their loved ones.
