Confronting the concept of dying is a separate process to confronting the reality of your cancer. If your doctor has told you that your prognosis is not good or has worsened, then you will need to come to terms with that fact in the way that is best for you and your loved ones. It is very hard to accept, let alone to come to terms with, and it can be tempting to refuse to face it by choosing not to talk about it, even though it may be constantly on your mind. If you are continuing to have treatment, then hope for a ‘miracle cure’ can easily remain stronger in your mind than the likely reality that you are not going to recover – it is a kind of coping mechanism.
It is rare for a person to completely refuse to acknowledge approaching death, when this becomes inevitable – although it can be complicated by the fact that so many variables are in play that no doctor can predict how long a patient will live. Most people do reach some form of acceptance, although this does not necessarily entail frequent and long discussion of the process. You may be inclined not to talk about it and try to put it out of your mind. On the other hand, you might be the sort of person for whom some discussion is important. Some people choose to go a stage further, and express their wishes and feelings about dying in a Living Will. This is a document which expresses your wishes for your medical and nursing care as you approach death. It may be that this is not strictly necessary in the sense that you know you will be well cared for. It can nevertheless help by giving a sense of control over your treatment right up to your death and help your family by allowing them to be sure that they are doing just as you would wish.
When Neil’s prognosis suddenly worsened considerably, we prepared three documents together:
a Living Will which set out his wishes regarding his medical care;
a ‘Death Plan’ which expressed his wishes on more general
matters such as whether he would like to continue having visitors as his death approached, the music he would like played and other issues which impinged on the environment and atmosphere in which he died; • Advance Funeral Wishes which set out detailed instructions for his funeral and burial.
This was an emotional but in some ways comforting exercise. Once the documents were prepared (and after we had sorted out other practicalities) we felt freer to concentrate our energies on Neil’s continuing treatment and our time together in the knowledge that these logistical issues were taken care of. It also allowed Neil the reassurance that he had expressed his wishes and that even if he became unable to communicate his thoughts adequately, they would be adhered to – which, of course, they were. The knowledge that we had discussed these incredibly important issues together was tremendously helpful to me, as I could feel at each stage that I was ‘doing the right thing’ – vital both at the time and in retrospect.
A good source of further information and pro-forma documents which you can tailor to your own needs is The New Natural Death Handbook produced by The Natural Death Centre. The Centre also produces a set of forms which includes a Living Will. The book What You Really Need to Know About Cancer by Dr Robert Buckman also includes a useful pro-forma Living Will, with additional clauses covering, for example, legal liability.
Some people make a Living Will while in perfectly good health to cover unforeseen eventualities such as severe and lasting brain damage or an advanced degenerative disease. The point of a Living Will is to make specific statements about the type of care and medical intervention you wish to receive and, equally important, not to receive, if you are close to dying in case it becomes difficult or impossible to make decisions yourself. If you have cancer and are not expected to recover, the circumstances are more specific, and your Living Will can reflect this. There has been much ethical debate about patients’ ‘refusal’ of treatment (although this is not necessarily what a Living Will expresses), and it is important that you talk about your Living Will to your GP and the doctors treating you to ensure that they accept and will act in accordance with your wishes. In practice, your wishes are likely to reflect the treatment you would in any case have received, but your sense of control will be enhanced if you make these statements yourself.
It is a good idea to use a pro-forma for your Living Will, and adapt it as necessary – although there is nothing to stop you drafting your own version. Please bear in mind that the points mentioned below do not cover all circumstances or illnesses and are purely an outline of some of the issues you might wish to consider, such as:
your views on medical intervention such as blood transfusions, artificial ventilation or antibiotics;
whether you wish distressing symptoms to be controlled by medications such as painkillers, even though these may shorten life;
your views about physical comfort, and artificial feeding and hydration (as opposed simply to maintaining comfort by having mouth and lips moistened);
whether you wish to die at home, if this is possible, or at the hospital where you have been treated or at a hospice;
any care you specifically refuse, such as transfer to a ‘high tech’ intensive care facility;
who is to be responsible for taking decisions on your behalf, should this be necessary (wife/partner/parent/son/daughter, etc).
A Death Plan (also available as a pro-forma from The Natural Death Centre) covers more general points such as:
(reiterate) where you prefer to be cared for;
the name of your next of kin and whether you have made a Living Will;
whether you would like to continue having visitors when close to death;
whether you wish it made clear to visitors that you are dying;
if you would like your wife/partner to sleep in the same bed/room as you;
any loved ones you would particularly like to be involved in your care;
your religious/spiritual philosophy (if any) and how this is to be applied to your dying;
the ‘ministrations’ you might appreciate – music, hand held, prayers, massage, reading, etc;
who you would like with you at the moment of your death;
(reiterate) feelings about pain control.
There may be other specific points you wish to include – the document is an expression of your personal wishes.
Your Living Will and Death Plan should be signed and witnessed, and copies given to those responsible for your care (GP, hospital doctor, hospice doctor, etc).
During Neil’s last days, I felt thankful that he had wanted to make his views and wishes clear. Through the sense of unreality it gave us something to focus on, to ensure that the music he requested was playing, that the comforts he requested were available, the people he wanted close were there. As he gradually became less conscious, I consulted both his Living Will and Death Plan several more times, to make sure I had missed nothing. The hospice staff were also hugely obliging, and made sure they too were familiar with their contents, volunteering the loan of a portable CD player, for example, so that we could play music easily. It made a big difference not to be constantly wondering whether we were doing as Neil would have wanted – because he had told us.