End of Life Care
As nurses it is perhaps one of the greatest privileges to be able to share the final journey with a resident. There is no doubt that an intimate bond is formed between carers and residents, and when death is approaching, it is often the carer who acts as an advocate ensuring the resident’s wishes are followed. Although patient advocacy is a national competency standard required by the Nurses and Midwives Board Australia, in our experience it most frequently occurs because of that intimate bond. However, the last thing we as health professionals want to do is play referee between a family and a dying resident. It is our job to make sure that the final stages of life are peaceful, pain free and person centred. To achieve this is not easy and we need to be pro-active to prevent rolling from one crisis to another.
An easy way to plan for end of life care is to break it down into stages and not be daunted by the enormity of it all. The foundation of all care will be based on good relationships and knowledge of the resident and the family. The care delivered must be dynamic, creative and flexible whilst being continually evaluated and tweaked. The family will take comfort in knowing that their loved one’s wishes were met, and this makes the post-death grieving process easier.
A good acronym to use is the following to stage end of life care because, if we pace it right, our care should be spot on:
P - Person Centred Preparation and Planning
A - Assessment and Autonomy
C - Care, Compassion, Comfort, Communication and Crisis Evasion
E - End of Life
PLANNING AND PREPARATION
It cannot be stressed enough that this phase starts the minute the person comes into care (residential or home care). We have already discussed the alarming statistics on the short lengths of stay in residential care, and this is why no time must be wasted in letting the resident ‘settle in’. Statistics prove they are in trouble well before this stage. Preparation and planning here refers explicitly to end of life issues with no masking it up or making it pretty; it is a tough conversation.
As Dr. Drew Dwyer likes to say ‘PPPPP’ = Poor Prior Planning results in Poor Performance. So the first thing to do is to find out the resident’s plan and purpose for what is left of their life. Commence discussion on Advanced Care Directives; be open with family and friends. They are all aware that this is end stage as not many people are discharged from nursing homes. Educate the family and provide as much information to them and the resident as possible.
Put in place all the mechanisms relating to capacity for consent, guardianship, Power of Attorney, legal Will, and any specific wishes the resident has regarding final stage care (music, flowers, candles, aromatherapy etc.) and funeral arrangements. Clarify what options are available regarding nutrition and hydration, spiritual care, hospital admission, pain relief and alternative therapies. As health professionals it is our role to discuss disease trajectory and treatment options. Whilst we cannot predict length of life, we can explain what will happen. Be detailed in who will do what, and how the person wants it done. It is important to involve the family in this stage so they are clear what it is their loved one wants. Should your resident be unable to communicate their wishes in any way (unconscious or advanced dementia), then it is important to have a family discussion and note all the values, beliefs idiosyncrasies and things that were important to their loved one. Choose a primary decision maker who will manage information and coordinate family involvement and support.
ASSESSMENT AND AUTONOMY
Continual assessment underpins good nursing care. During this stage the frequency of review and Care Plan changes and will increase as the condition worsens. We uphold the resident’s right to autonomy and ensure that we are implementing person centred care. Assessment may be stepped up from the usual 3-month review to a monthly review, and then very quickly may become weekly and then daily.
Medication review now means focusing on pain relief and releasing the burden of any treatments that are not likely to be beneficial at this stage in life. Alternative modes of administering medications are considered such as patches, sub-cutaneous injection or oral liquids.
Nutritional assessment will indicate the need for a change from normal to soft diet. It is well documented that PEG feeds and naso-gastric feeds have no benefit in end stage dementia, and these should have been ruled out as an option is initial discussions. Force feeding dying residents hopefully is a thing of the past.
CRISIS EVASION: CARE, COMPASSION, COMMUNICATION AND COMFORT
When caregivers, family members, and loved ones are clear about the resident’s preferences for treatment in the final stages of life, they are free to devote their energy to care and compassion. Family need to be family first, and only participate in care if they want to. You must give them the option. Compassion must not only be shown to the resident, but also to the family and staff (remember that intimate relationship).
During this stage, crisis is avoided by continuous communication with the multidisciplinary team, family and resident. Through the assessment process risks are identified and managed early and the resident is made as comfortable as possible. Care is stepped up and reviewed frequently.
The resident’s wishes regarding emergency and medical treatments are respected and, should any crisis occur, all healthcare professionals involved in care must be aware of the advanced care directive. At all times we are advocating for the resident and respecting their wishes.
Care in the later stages should be intensive. The resident is kept clean and comfortable. It is important to also pay attention to detail and keep the room as clean and tidy as possible, minimise clinical equipment and clutter, and keep a peaceful ambience. Avoid excess noise and respect the family’s right to stay with their loved one as long as they wish, and plan care around them.
END OF LIFE
Although death is a personal journey, as life comes to an end there are common signs and symptoms indicating death is imminent. By now the person will be bed bound and semi-conscious or totally unarousable. As they get closer to death some may have a surge of energy or show some signs of wanting to communicate or even eat. This has been described as ‘coming to terms with death’. This can be puzzling for family, and it needs to be explained and anticipated to avoid false hopes.
These signs of energy are short lived, and soon the condition deteriorates even further with breathing becoming irregular, gurgling, rattling and sometimes long periods without a breath at all. There is peripheral shutdown with blue tinging of limbs and mottled skin. The eyes may be shut or open but without seeing, and it is believed that hearing is the last sense to go before death. Spiritual care is very important at this stage and meeting cultural and traditional wishes should be part of the Care Plan.
Eventually Cheyne-Stoke breathing occurs, urine output stops, the pulse grows weaker and death takes place.
This is where the care and compassion will shift from the resident to the family as they grieve. It is important they are given space and time to be with the resident. It is important to prepare the body well for viewing, and add some special touches like flowers or candles in the room; some may like quiet music or hymns. At all times be respectful and offer the family beverages and privacy while they deal with their loss. Chaplains or other spiritual leaders may be contacted to fulfill the wishes of the resident.
As mentioned at the beginning, this is a remarkable journey to go on with a family and we can ease their pain and have them leave with happy memories, rather than be tortured by “what ifs”. In the meantime, our role as nurses has been fulfilled as we have not only followed the nursing process to a good outcome, but we have prevented that dissonance sneaking up on us making us think that maybe we could have done things better.