Many people make it known that they would not wish to be resuscitated or receive life-prolonging treatment if their quality of life was to suffer due to debilitating illness. For other patients, when it is clear to the medical team that treatment is not helping their condition, and that they are beginning to die, the doctors will decided to begin to stop, or withdraw these treatments.
In the case of an emergency admission to hospital, for example, after a major stroke or heart attack, you may feel it necessary to inform medical staff about the wishes of your relative. However, it is important to understand that any decision to stop life-extending treatment is jointly make with doctors, and no pressure will be put on you for this to happen. The doctors will usually try to understand your thoughts, but they are not asking for your permission to withdraw life-prolonging treatments.
It can be very upsetting to be involved in such discussions on behalf of a relative who is unable to make their wishes known for themselves. So, take your time to talk through any concerns you may have with medical staff, and also with other relatives.
Once a decision to withdraw life-prolonging treatment has been reached, your relative may be placed on an End-of-Life Care Pathway, and this will be clearly stated on their medical notes.
When initiating an End-of-Life Care Pathway, doctors and nurses focus on making the person as comfortable as possible. Fluids may be stopped and the person will receive only essential medication for the relief of distressing symptoms (pain-relief, anti-sickness drugs, etc), and nursing care such as regular mouth-care, washing and turning. Nursing staff may also insert a catheter into the bladder and give medication to ease the secretions in the back of the throat when the person is no longer able to cough.
It is difficult to gauge how long someone may take to die. For those sitting with the dying, it can often feel like a very long time. You may also at times feel distressed – and even guilty – about your relatives being on an End-of-Life Care Pathway. However, it may help you to know that this offers the most comfort for your relative, and support for you and your family.
The death of a close relative is a critical time for families. Although it usually falls to the immediate next of kin to provide support and care, the dying process can bring about a togetherness within the extended family unit that usually only happens on anniversaries and holidays. This togetherness can be – although sad – a wonderful shared experience for all concerned.
Having said that, death—especially of the second parent—can bring back into focus family feuds and other unresolved issues back which may have lain dormant for years. This may be a good time to resolve past hurts and grievances. However, do be aware that emotions will be running high, and tempers can easily fray.
Family members can react differently. For example:
- Some will have a warm relationship with the dying person. Others may be harbouring dislike, grudges or anger.
- Some will freely embrace what is happening. Others may want to deny that the person is dying.
- Some will be happy to stop life-extending treatment. Others may not want this.
- Some may feel horrified or even sickened by the person’s deterioration, and find it difficult to sit with them.
- Relatives who live at a distance may feel guilty for not being there. Others may avoid contact due to family conflict.
- Relatives who care for the dying person may feel their own life is on hold, and become angry and resentful with the rest of the family for not pulling their weight.
- Sibling rivalry may surface and divide loyalties, causing further resentments and disputes.
- Some may be holding onto secrets that no-one else knows, and this is causing them distress.
So, be prepared for this to be an intense time which needs patience and understanding, and a willingness to communicate openly and truthfully with the rest of the family.