Some guidelines, both practical and pscyhological, to support you through a challenging time.

Receiving a terminal diagnosis

 

Receiving the diagnosis

‘The receipt of the news that one has a terminal illness is devastating, usually a personal tragedy beyond measure, both for the one who has the illness and the ones who love him or her.’ *[1]

No matter how well-prepared we think we are, receiving a terminal prognosis from our doctor is usually an enormous shock – to ourselves and our loved ones. Life can suddenly seem overwhelming, as one tries to absorb the many feelings that come up and to deal with many practical issues.

It maybe that you receive the news unexpectedly, but generally you will have some idea that you are facing a serious health condition. Perhaps you are waiting for some test results and your doctor calls you and asks you to come to see him or her – sometimes immediately. It’s understandable if you feel apprehensive and fearful.

Find a friend or family member to accompany you. They’ll provide a second pair of ears to hear whatever the doctor has to say. Having someone to stand by you – to hold your hand, for example; to get you from A to B and back again, and to generally offer moral support – can make the situation less fraught.

Your doctor or consultant knows that you may well be in shock and unable to take in or understand what she is telling you. Telling a patient that they are dying is generally one of the most difficult things for a doctor to do. His or her own issues about death are also in the frame – both professional and personal. There may be a feeling of failure at ‘losing a patient,’ or an inability to cope with your or your loved one’s emotional reactions on hearing the news. Doctors also vary in the way they are able to empathise with their patients and to articulate clearly and compassionately the facts of your prognosis. The degree to which your doctor can meet your needs at this critical time may be a factor in the level of shock and denial that you experience.

When you have had the chance to recover from some of the initial impact and have some questions, you may be asked, or ask to come for a follow-up visit.

 

Do you need a second opinion?

On rare occasions the doctors get it wrong. As all of us, including doctors and lab technicians, aren’t infallible and sometimes mistakes are made – perhaps a mix up in labelling, faulty equipment, inexperience…. Who knows?

On hearing the news from your doctor that you are going to die you might respond by thinking that there’s been a mistake. Check in with your family and friends when you feel able to: Is this the shock or denial speaking, or is there justification for asking for a second opinion? In most countries you are entitled to ask for a second opinion from another doctor or consultant.

Being told by a trusted medical authority that you are going to die can be enough to make a few people do exactly that. There are stories of patients who have been wrongly diagnosed and who, on hearing their prognosis, immediately died or died after exactly the remaining life span quoted by the doctor. On subsequent post mortem the diagnosed disease has been found to be absent – the person died because they believed they were going to die. This is an example of the nocebo effect. For this reason alone, you might want to seek a second opinion.

In most cases your doctor will be right in his prognosis, but it can be helpful to hear it from a second doctor, one who may have different or additional suggestions or information. A second opinion might also help you to move through any feelings of denial you may be experiencing.*

* On one hand it’s important not to try to force someone to drop their feelings of denial. Denial is an unconscious mechanism and if someone is in denial it’s because that’s the only way they have to cope with what is happening. And yet if the denial is prolonged, the person is robbed of the opportunity of preparing themselves for death. K.D. Singh writes ‘Spiritually, the transformation in consciousness has the opportunity to begin in earnest only after the stage of acceptance.’ *[2]

 

Dealing with Feelings

Among the many and changing emotions there may be an initial sense of numbness and disbelief, followed by denial or anger, or sadness, fear and anxiety. Over the next days or weeks you might feel ambivalent about your prognosis. That is, there might be days when you accept what is, which are followed by periods of resistance and a determination to fight. There may also be times of insecurity, of doubt and not-knowing; of shame and of guilt. And there might be quite different feelings – such as relief, acceptance, love, and gratitude. Those last four do not tend to be problematic, so let’s focus on those emotions that do.

In all the confusion and change, it’s good to know that:

 

The Practical Concerns

In addition there are practical issues: Is my Will in place? How can I create an Advance Directive? Should I ask someone to be my attorney for health and welfare? How much is my care eating up the family’s finances? How will the children cope without me? and so on.

See also Planning for your future healthcare and Planning for the end of life.

 

The Potential for Transformation

Hearing words such as, ‘I’m very sorry to tell you that there is nothing more that we can do for you; your condition is terminal,’ can have a profound effect on the recipient. As we’ve noted shock and denial are common reactions.

Yet numerous people live through their living-dying as a time of tremendous inner richness and growth. Among them is Philip Gould. A politician (he was former UK Prime Minister, Tony Blair’s, polling strategist and a member of the House of Lords), he was also a meditator. Diagnosed with oesophageal cancer, he wrote in his inspiring and touching book…. [3]

‘[When the doctor said, “You are going to die,” we knew this was it] Gail and I just looked at each other and started to cry. I cried endlessly for hours; I was so sad. We knew this was it and we knew there was no escape, and so we cried.

‘A day later we bounded back and moved to a different place…. It was a totally transcendent moment. I saw now that the purpose I had been seeking was to give as much love as I could…. I was dying; I had to make the most of that and my purpose was explicit. And so my death became my life. And my life gained a kind of intensity that it had never had before. It gained a quality and a power it had never had before.’

See Maneesha’s review of When I Die: Lessons from the Death Zone

Steve Jobs, too, knew the transforming power of accepting one’s death, when he said…:

Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything – all external expectations, all pride, all fear or embarrassment or failure – these just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.’

Though given back in 2005 Steve Job’s address to Stanford University – especially in the light of his later death – is compelling. The whole 14-minute speech is inspiring; the portion about his receiving a terminal diagnosis and his subsequent thoughts around mortality extends from 9:05 to 1300.

 

Telling others

Telling others about your prognosis might be challenging. If you cannot accept what you’ve been told, you may want to keep it to yourself for fear that talking about it will make it so. You may be afraid that you will upset your loved ones or become ‘overly-emotional’ yourself when telling them. Or perhaps you are afraid of being judged by or isolated from people; of exchanging your personhood and all that that implies for becoming a patient, and all that that implies.

It is your choice if and what you tell people. However, most people find it beneficial to tell their loved ones and anyone else who will be affected by their illness and subsequent death. You might choose to tell just one or a few people close to you and then ask them to tell specific others.

Depending on the relationship you share, among those you tell there may be reactions of sadness, fear, grief, or regret. Not all of them may choose to stay connected with you; it may be simply too confronting to face the reality of death through you – someone they know and love. However, generally your friends and family will be glad that you have confided in them so that they can support you – for example, in helping you sort out all your practical affairs or doing that for you if you are no longer capable – and can understand to some extent what you might be experiencing.

Knowing that they have limited time with you, they have the chance to show their love and appreciation of you. Along with expressing their love, they might also realise that they need to clear up any unresolved issues with you, or to join you in compiling and ticking off items on your ‘bucket list.’

 

Creating a support network

This is the time to allow those who love you to rally round – whether they are family, friends, colleagues, the medical profession, spiritual advisors or others. See Creating a Support Network

 

Next steps

As needed, start preparing yourself (and your loved ones) practically, psychologically and spiritually for the journey ahead. See also Emotional Changes in Sickness and/or Dying and Planning for the end of life.

You may find it helpful to check out the many other resources in our Death & Dying Toolkit. This toolkit is primarily for the person who is dying although it has many resources which will be of help to those caring for someone who is dying. For Carers please see our Carer Toolkit.

 

Sources/ Recommended Reading

1, 2) The grace in dying: a message of hope, comfort, and spiritual transformation Kathleen Dowling Singh (Pub: HarperOne)

3) When I die: lessons from the death zone   Philip Gould (Little, Brown)

 

Access Your
Free Guide