The dying process & the importance of future care planning

16th December 2023, 12:19 pm

Each person’s dying journey is unique. However, there are symptoms common to the stages of the dying process that one may experience. For example, in the last 12 months of life, pain, fatigue, difficulties breathing, swallowing and lack of appetite and constipation, as well as feelings of frustration, confusion and a mix of hope or hopelessness have all been noted. These symptoms may become more marked as one approaches the last months and weeks of death. During this period, as the bodily functions and organs start to slow down, other symptoms have been noted. As the digestive system slows there may be nausea and vomiting and reduced appetite and thirst, along with diarrhoea and general discomfort. As the largest organ of the body – the skin – starts to weaken, there is bruising, skin irritation, and a general loss of viability. As the respiratory system starts to slow down, there is an increase in respiratory tract secretions. This is often accompanied by marked weight loss, increased napping and sleeping. There are also cognitive and mental shifts. For some there is restlessness, agitation, and anxiety. Also, during this time there may be greater levels of reflection (leading to high or low mood swings) and a slow withdrawing from daily activities and interests with an increase in ‘being with oneself’. Importantly, these symptoms can work alongside - exacerbating symptoms caused by - existing diseases, disorders, cancers, or co-morbidities.

As one approaches death, there may be other signs such as lowered body temperature and blood pressure, increased sweating, together with an irregular pulse, and skin and breathing changes that include loss of colour to lips and nail bed, and a rattling sound of cough. For many the breathlessness this may cause is most alarming. Along with short bursts of energy, there may be less or no talking. Restlessness and agitation, along with longer periods of sleeps and the appearance of delusions, hallucinations and not being fully present.

All these are signs of the body and key bodily and cognitive functions slowing down and dying.

Finally, as death is hours or a few days away, the rattling (which sounds like a person is choking but they are not) become more pronounced, as does periods of not breathing and non-responsiveness which that occur until finally, the breathing stops all together.

There. I have sought to outline how people die.

My description does not give the process the value, the beauty and naturalness it deserves. I can only pass on the gift that was given to me during my doula training: ‘ What happens as we die’, a beautiful, insightful and powerful Ted talk delivered by Kathryn Mannix.

https://youtu.be/CZDDByT0Vr0?si=vsgW0_uBFocOayGm

Pain

Mannix puts to rest one key fear people may have death: how they will die, just as the movie ‘End Game’ makes that case that one way to approach death is with curiosity and mystery. What has not yet be covered and what concerns me the most is how to understand and manage pain. Giving birth is painful. Although death is not painful, dying very often is, not least for those with terminal illness or those experiencing levels of fear, anxiety and upset.

Pain if a felt sensation, a signal from the body to the brain. Ongoing conditions (e.g., arthritis), illness, injury, or treatment or an operation can all be causes of pain, that may be exacerbated by the pain felt as key organs begin to fail in a dying person. Nerve, bone, soft tissue or visceral pain as well as phantom and referred pain were all explored in the course, along with the increased levels of agitation that often occurs. Along with physical pain there is emotional and spiritual pain (as the table below shows).

Signs & Symptoms of Physical Pain	Signs & Symptoms of Emotional Pain	Signs & Symptoms of Spiritual Pain
• Frowning • Grimacing • Appetite changes • Poor sleeping • Fearful expression • Teeth grinding • Fidgeting • Groaning or moaning • Crying • Sighing • Heavy breathing • Decreasing activity • Change in gait • A loss of function	• Forgetfulness • Poor concentration • Dull senses • Lethargy • Boredom • Low productivity • Negative attitude • Anxiety • Mood swings • Anger • Bad dreams • Irritability • Crying spells • Nervous laughter • Dependency on others	• Emptiness • Loss of meaning • Doubt • Martyrdom • Loss of direction • Cynicism • Apathy • Abandonment • Worry • Loss of hope • Isolation • Distrust • “No one cares” • Guilt • Loss of hope • “Why is this happening?”

My passion for the work of walking with the dying is rooted in a strong belief in the ways in which humans are connected to each other, to nature and to the universe, and with a strong desire to work in fellowship and in union.

For me, death doulas seek to address the emotional, physical, and spiritual support to individuals facing end-of-life care, their circle of support and the community. What is evident is that all levels of pain need to be attended to. For example, the wide range of medicines that are offered to relieve physical pain and reduce anxiety and agitation that can be included to ease a person’s pain is something a death doula should be aware of. Perhaps of equal importance is the need for advance or anticipatory care planning (ACP). ACP is one important tool that can be used to capture and record a person’s wishes, desires and expectations, offering ways in which to address potential pain - in all its facets – in their dying journeys.

Advance/ Anticipatory or Future Care Planning

My understanding of care is that it involves comprehensive attention to a person’s wellbeing, welfare and sense of self, shaped by compassion, empathy and humility. ‘Advance care planning’ (ACP) is the term used to describe the conversation between people, their families and carers and those looking after them about their future wishes and priorities for care.  Advance care planning in Wales, now referred to as "Future Care Planning," encompasses honest conversations and the documentation of decisions about future care, including for people with diminished mental capacity.  Importantly, ‘Future Care Planning‘ (FCP) has been introduced in NHS Wales as an umbrella term to encompass both Advance Care Planning  - for those who have the capacity at the time to contribute to the plan - ), and  Best Interests Decision Making for individuals who lack ‘decisional capacity’ and therefore cannot make informed choices regarding heath and social care needs. Such planning is as much about the practicalities of life and of dying as it is about finding and centring what matters to people.

From value comes meaning.

Ultimately, such planning seeks to improve the quality of care at end of life and improve dying experiences. Future planning works to foster greater autonomy, choice and control, reduce unwanted or invasive interventions, treatments or hospital admissions, guiding and enaabling better planning of care at end of life. Importantly such future planning also provides space for consideration of spiritual support and perhaps allows space for greater understanding of the dying process.

The process is variously described, with ‘think talk discuss, record, share repeat’ being the catchy one for me so far.  The key components of an advance care plan include:

1. Reflecting on Values and Wishes: This involves thinking through what matters most at the end of life and guiding decisions about future care and medical treatment;

2. Meaningful Conversations: Having open and honest discussions with loved ones about medical care preferences;

3. Documenting Preferences: Creating an advance directive or a value-based summary that outlines specific medical care preferences, and practical end-of-life care wishes;

4. Capturing and Revisiting the Plan: Ensuring that the advance care plan is documented electronically and regularly revisited to align with current values and goals for healthcare.

Considered living documents (thus subject to change over time based on an individual’s shifting circumstances and desires), Advance Care Planning may include:

•     A future care plan (record of best interest decisions for people who lack capacity

•    An advance statement of wishes – guidance based document

•    An Advance Decision to Refuse Treatment (ADRT)  - legally binding form

•  Lasting Power of Attorney (LPA) form and guidance – legally binding  

•  Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) guidance and work taking place in Wales

• Last Will and Testament

• Organ donation (in Wales there is an opt-out policy, so if you don’t register it will be assumed you consent to organ donation)

Will the above address all aspects of pain?

No.

Will advance care planning ensure a death without fear, anxiety or stress?

No.

Will I be able to erase every pain from those I walk alongside?

No.

However, an exploration of the questions, issues and considerations raised in advance care planning remain pivotal to our work as end of life planners. They provide tangible scaffolding to capture and record what means most to people who know they are facing death, or wanting to anticipate and plan for this stage of life.

From value comes meaning.

I see part of my work as being able to inspire those who re dying to live in the here and now. By that I mean to find out what is meaningful to them - what is of value - and to place that as central to my work with them. By holding space - opening conversations as they let me, and gathering together the strands of meaning and meaningfulness in and of their lives - I hope to bridge their life with their death.

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