Many people come to reflect that the end of their life is not far away, possibly because of great age or they may have received a diagnosis of a life limiting illness of some kind. Most people are concerned that whatever care they receive, it respects and supports their personal dignity. People know that a time may come where they will lose the mental capacity to fully appreciate and be able to make choices about how they will live. When it comes to the medical management of the very end of life, most people know they can make an “Advance Decision” or “Living Will” to instruct healthcare staff as to whether they want strenuous methods to be used to attempt to resuscitate them if they are close to death. Where a loss of mental capacity is anticipated, a person may make out a legal lasting power of attorney which governs certain legal decisions to be made on their behalf concerning finances and welfare needs.
Less well appreciated is how important it is to let others know of wishes and preferences way before that end of life stage, but during a time of high dependency care by others. The “Will to Live” is a document which can be drafted as part of the process of Life Review, or by itself.
A “Will to Live” is a document made ahead of losing mental capacity, perhaps through some kind of dementia, and being required to live in a high dependency circumstances. It is an expression of a personal self and philosophy of life within a meaningful and documented history of a lived life. It answers the question “Who is this person?” The document sets out important preferences and choices concerning what is required to feel cared for with dignity and contentment, when there is limited capacity then for communication and self expression. The document tells whoever is caring for a person, that he or she is making the following statements to express their selfhood and personal choices. He or she:
- Is not only a frail, aching, and clumsy old body, a “crabby old woman (or man)”, but rather a person deserving dignity, and that the care given which respects this, is valued and appreciated even as the capacity to show such may compromised.
- Has had a life history, and has accomplished significant tasks in life, and overcome major difficulties even if the memories of those are fading.
- Has a personality, and a core self, even if that is changing somewhat. Has held values, opinions and commitments over long periods of life. Would like to be known and acknowledged for these.
- Has something of a philosophy of life which has provided meaning, spiritual comfort and encouragement in the face of adversities, even if the expression of those matters is diminishing in clarity right now.
- Has a need to be offered forgiveness, whilst that is still a possibility.
- Has a need to express all the reasons to be grateful for the good things of their particular life, and have that gratefulness recorded and reminded, even as the capacity to recollect may be attenuating.
- Has loved and been loved and carries remembrances in their heart and mind.
- Has had joys and disappointments which re-play during Reminiscence. Wishes for reminders of these and anniversaries of certain events in life to be marked, even if the memories of such are ebbing.
- Needs to be touched in a certain way, and not others.
- Would like to be visited by some people, perhaps some more than others.
- Is aware that their behaviour may be challenging and difficult for close loved ones or a partner, and seeks to reassure that a loved one has full permission to make arrangements so that their own life is not spoiled or compromised by an excessive burden or abusive demeanour. Even if the person writing the “Will to Live” would prefer to live at home and have all their care needs met by their closest loved one, he or she may recognise that e.g. going into an assisted care home may be the best decision at a future time, especially if when that time comes, they lack capacity to decide this. It is an act of love to make this clear ahead of losing the capacity and power to do so.
- Has preferences for food and drink, clothing and the way he or she looks.
- Has interests e.g. gardening, certain kinds of music and the other arts, which can continue to be fostered and supported, to some practical level, notwithstanding that competences may be waning, and assistance is needed.
- Wishes to see some kind of legacy being handed on to those who will survive their loved one’s death, so they too can see and appreciate the important things in the life and relationships of the person, and to understand what gifts of wisdom / lessons of life being passed on.
- When the time comes to plan a funeral, there are thoughts and wishes a person would like to be taken into account, by friends, family and the funeral celebrant when designing that ceremony, so that it most fully celebrates their life.
- Gives whoever would be an advocate for the elder person, the best possible basis to work on.