Facing a Terminal Illness

When shocking news of a terminal illness confirmation comes in, it becomes a turning point of life. End of life is real but we are often unprepared. 

Crisis management

Facing terminal illness represents a personal and family crisis. It impacts the patient and his/her family, as family is the primary resource for care and support. Every member of the family is going through the difficult time with their loved one, along with the illness progression.  You don’t have to fight alone. Reaching out for help when needed, there are many resources available, from healthcare system, health insurance network, private health coaching, social services, community and friends, for support.

Allow yourself to feel complex emotions and take your time to calm down your mind. After dealing with the initial shocking and emotional experiences - fear, anger, resentment, denial, helplessness, sadness, and frustration; acceptance will eventually come in confidence to face with the reality and reset life. Go forward with hope and a plan for what you want to do and accomplish.

Make health care decisions

This is the most important decision to make and it is a personal one. Take your time to well understand your treatment plan options and palliative/hospice care before making this decision.

Key steps including:

*Learn about your diagnosis – learn everything you can, the prognosis, progression, treatment options including efficacy, safety and cost and set treatment priorities as you wish.

*Learn and think about end of life and palliative/hospice care, lifespan vs. health span, and level of quality of life.

*Establish a practical support network to maintain daily routine and care.

Address financial and legal issues

It’s time to think through and make a living will and a will. Careful consideration of both the legal and financial aspects of your illness can bring a sense of control and peace of mind.

A Living will 

This is a heavy topic. No one wants to think about end of the life; however, it is wise to thought it out before the unexpected illness strikes. With a peaceful mind at a leisure day, answer a few questions -

1. In case of cancer or other life-threatening/terminal illness, what medical treatment you want or don’t want? Life extension or quality of life means more? Treatments are hopeful or too risky?  Pursue unknown% chance of treatment success rate or choose comfort and palliative care is more realistic? These critical decisions are personal.  To fully understand each treatment options for its action and side effects, asking questions and reaching out for reliable resources. You have the right to know everything to make your decision, including comfort care, artificial feeding, and cardiopulmonary resuscitation.

2. Who do you trust to make medical care decisions when you are unable to do so? Consider a person, whom you trust and also with high health literacy, to make care decisions for you as power of attorney when you are not able to make care decisions for yourself.  This person should fully understand your wishes and act for your best interests/benefits.

3. What you want others to understand you values and respect your life
It is wise to have a living will, to make your wishes clear, well known, and respected. This may take some thoughts. The Five Wishes can be a helpful tool.

You may also plan and draft a will at any time. When you are ready to make it legal, meet with a lawyer in your state.  Many people asking the difference between a living will and a will; they have very different functions and it is important to have both.

A Living Will contains your thoughts and wishes regarding whether you do or do not want to be kept alive by artificial means if you are at a point, due to accident or illness, where the doctor says there is no longer a hope of recovery for you. It is a chance to give your family guidance as they struggle, in a highly emotional situation, to figure out what you would have wanted them to decide for you.

A Will

A Will contains your wishes for how you want what you own to be distributed among your family and friends once you pass away. It can also contain instructions for the care and support of your family members, such as naming a guardian for your minor children. It is a road map of instructions that should be prepared in accordance with the laws of the state in which you reside.

Address health care expenses

Medicare/Medicaid benefit coverage (if applicable)

Supplemental/private Insurance coverage (if applicable)

Update financial documents and beneficiaries and plan care of your dependents

 

Get documents in order

Organize legal documents and other important personal information, may include:

·        Will

·        Trust documents (if applicable)

·        Living will or directive to physicians

·        Health care power of attorney, or HCPOA

·        Durable power of attorney, or DPOA

·        Health Insurance Portability and Accountability Act, or HIPAA, form

·        Adoption papers (if applicable)

·        Veteran's discharge papers (if applicable)

·        Prenuptial agreement (if applicable)

·        Marriage certificate (if applicable)

·        Divorce decrees (if applicable)

·        Death certificate of a spouse (if applicable)

·        Citizenship papers, if not born as a U.S. citizen

 

Other important information can include:

·        Inventory of assets with account numbers and passwords, including safe-deposit box access

·        Digital assets and passwords like photos or music stored in the cloud

·        Access to your computer

·        A list of contacts

·        Receipts for funeral arrangements

·        Obituary and services guidance

Managing self-care and emotional needs

Be open for your emotional needs and optimize self-care for physical comfort. Create a comfortable home setting for remission recovery.  Learning to face your emotions, manage stress, pursue activities that bring your meaning and joy. If need additional outpatient help, may consider private health coaching and homecare services for care and support.

In addition, there are resources for self-help and support, see selected links below, as well as disease specific support groups are also available.

https://www.helpguide.org/harvard/dealing-with-a-loved-ones-serious-illness.htm
https://www.livestrong.org/
http://www.alz.org/index.asp

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