Coping with terminal illness

Being diagnosed with a terminal illness inevitably comes as a devastating blow for the patient and their loved ones. Few life events seem to be as unfair as suddenly facing coping with terminal illness, particularly to someone who has lived sensibly, adopted a healthy lifestyle, and done their best to look after themselves over the years.

What is terminal illness?

The expression terminal illness is generally used to describe an incurable illness that will result in death within six months or less. In many cases, early diagnosis can positively influence the prognosis, along with careful management of lifestyle, regular medical examination and the support of a trusted doctor.

Whatever the eventual outcome, the patient and their carers can do lots to help - and a wealth of information is available in print and online, to help patients and carers deal with different types of terminal illness.

Preparing to hear a terminal diagnosis

Fear, uncertainty and confusion are normal for anyone who's just been diagnosed with terminal illness, or who faces medical tests that might reveal serious disease.

Asking for support during consultations, when learning results, or simply when you're feeling low, is very important. No one should feel ashamed to ask for assistance; friends and family will appreciate the opportunity to be involved and to offer more than just sympathetic words for a terminally ill loved one.

Advance preparation, maybe some background reading or a chat with someone who has been through the experience, is often helpful.

  • Research well-written articles at a local library or on the internet
  • Prepare a list of questions for your medical advisor(s)
  • Be aware of the dangers of inaccurate self-diagnosis

Adopting a positive mental attitude

Patients and their loved ones might draw strength from the fact that doctors' prognoses are occasionally proven wrong. Hard as it might seem, this is the time to start doing everything possible to maintain hope of a positive outcome:

  • Think positively
  • Get a second opinion
  • Verify test results
  • Consider arranging another test

If the diagnosis is eventually confirmed, do the following:

  • Establish objectives to help use your remaining time effectively
  • Plan short-term and long-term activities
  • If not already done, prepare a will and put your financial affairs in order
  • Terminal illness insurance: establish whether financial assistance is available from terminal illness benefit or terminal illness cover
  • Consider organising a living funeral for family and friends

Dealing with the emotions after a terminal diagnosis

After a terminal diagnosis most people experience varied emotions ranging from anger to powerlessness. This is normal and marks the beginning of an emotional journey that, for most patients, leads to eventual acceptance of their fate and the finding of peace. The main emotional stages after a terminal diagnosis follow a well-documented pattern:

  • Shock and disbelief
  • Denial
  • Anger
  • Grief
  • Fear
  • Bargaining
  • Depression and sadness
  • Acceptance

Throughout the process, being able to demonstrate positive and negative emotions openly helps the patient and those around them. This is a time for frank and honest conversation without avoiding the reality or putting on false-fronts of stoicism and bravado. Talking about feelings, with family or friends, a minister of religion, or a professional counsellor, is a recognised way to come to terms with what's happening.

While some patients will overcome their illness and prove the doctor's prognosis wrong, this will not be the case for others. For them, the realisation that everything possible has been done to regain health, and the resulting calm acceptance, are important steps on the route to a peaceful and dignified death. Indeed, the acceptance of the inevitable often helps them make the most of their remaining time.

There are even those who argue against giving an expected survival period, citing examples where patients outlived doctors' predictions before, freed from the constraints of a set period, enjoying months or years of quality life before their eventual death.

Helping someone face terminal illness

Helping a life partner, a terminally ill child, or a close friend deal with a terminal illness is probably among the hardest challenges anyone can face. The dynamics of personal relationships can change markedly under these circumstances; not least because the patient might change in unpredictable ways after learning their prognosis and as they do (or do not) come to terms with approaching death. Above all, friends and family should prepare themselves for surprises, tests of their patience, and the inevitability that longstanding relationships can alter in unexpected ways.

Until a terminal prognosis is delivered and confirmed, neither the patient nor their loved ones know exactly how they will react. Friends and family should be aware that both they and the patient might, at least initially, be unable to cope with the diagnosis. Denial, however, is itself an important coping mechanism, a key stage that can often be worked through by talking about what is happening and by the realisation that loving support is available.

Coping with a terminal illness often brings families together in positive ways; support comes from unexpected quarters, while heart-touching gestures such as intimate recollections and spontaneously written letters or poems for the terminally ill person bring immeasurable comfort. Sometimes, however, people close to the patient can be so consumed with their own grief that they find it difficult to offer support. This is where support groups and charities such as Age Concern, The Rainbow Trust (specialising in the needs of terminally ill children), Winston's Wish or Marie Curie Cancer Care really come into their own.

Books on dealing with terminal illness

The following is a small selection of titles that might be helpful for anyone who wishes to understand more about how to cope with terminal illness:

On Death and Dying
E. Kubler-Ross
ISBN-13: 978-0415463997

Dealing with Terminal Illness in the Family (Focus on Family Matters)
Heather Lehr Wagner
ISBN-13: 978-0791066928

At Home with Terminal Illness: Family Guidebook to Hospice in the Home
Michael Appleton, Todd Henshell
ISBN-13: 978-0132998437

Fear No Evil: One Man Deals with Terminal Illness
David Watson
ISBN-13: 978-0877882480

Before I Say Goodbye
Ruth Picardie
ISBN-13: 978-0140276305

C: Because Cowards Get Cancer Too...
John Diamond
ISBN-13: 978-0091816650

My DonkeyBody: A Journey with Terminal Illness
Michael Wenham
ISBN-13: 978-1854248893

Caring for Someone Who Is Dying (Caring in a Crisis)
Penny Mares
ISBN-13: 978-0862421588

I Don't Know What to Say
Robert Buckman (Author), Dr. Robert Buckman
ISBN-13: 978-1550130928

Putting your affairs in order

Part of coping with terminal illness lies in putting your affairs in order and making practical and emotional provision for those who'll be left behind. If not done already, making a will should be a priority. Similarly, planning for funeral arrangements and leaving wishes and mementoes for loved ones might take on a new urgency.

Maybe you want to avoid being one of the many people who die without making a will in the UK each year? Alternatively, perhaps you simply want to spare your loved ones the worry and uncertainty of second-guessing your wishes after you die? Either way, the Well Planned Funeral offers a range of secure, easy to use, online services to help you.

Firstly, there's our online will making service, giving you the choice of a free, immediately-available PDF will, or a solicitor-checked will. Then there's the Your Funeral Plan and Wishes product, a Your Life CD and Memories product and our Online Memorial. Together, they mean it's never been easier to make sure your wishes are correctly fulfilled and that life is made easier for those you leave behind.

Further Useful Information

Contact a terminal illness charity to help you cope. Consider putting your cherished memories on dvd.