Nutrition, hydration and end of life care

Nutrition and ageing

Society is ageing, people are living longer, and the fastest growing cohort is those aged over 80 years. In the UK life expectancy at birth for women is now 82.9 years, and is  slightly less for men at 79 years,¹ a little above the Biblical three score and 10.

By 2050, 4% of the world population is expected to be aged over 80.² As people age, they accumulate medical problems and many will become frail, with at least 25% being defined as frail in those aged over 85.³ The number of old people being admitted to hospital and other longer-term institutions is high. In England during 2017 3.5 million people aged 75 years or above were admitted to hospital which accounted for 22.2% of total admissions.⁴

Reality dictates that no one lives forever, and death comes to everyone, eventually. None of us can predict with any certainty when our time is up, but an individual will often know when the end is approaching, even if their nearest and dearest do not.

This paper discusses the timing of the end of life, and issues that nurses may be presented with respect to nutrition and hydration, and place of death in people who are coming to the end of their life. It does not deal with ethical issues pertaining to patients in intensive care units or in a persistent vegetative or minimally conscious state.

How is end of life determined?

What is, and when does the end of life begin? One definition is of life-limiting disease with irreversible decline and with an expected survival in terms of months or less.⁵ For many, both public and professional, the time frame has the potential to span days, weeks or up to 1 year before predicted death.^6-7

The general lack of a clear definition has the potential to cause ethical tensions for all clinical staff.⁸ However, use of tools such as Gold Standards Framework,⁹ the Amber Care Bundle,¹⁰ or the Supportive and Palliative Care Indicators Tool (SPICT) may help.¹¹ Early signs in the preceding weeks to months may include weight loss, reduced appetite, slowing down and increased fatigue. Nearer to death, changes in breathing pattern, rattling whilst breathing due to secretions, mottling of the skin and drop in skin temperature may all occur.

Treatment goal

As people come to the end of their life, treatment goals change from one of cure to one of support and comfort, for the patient, their “family” and attending staff. The initial challenge is identifying when people are coming to the end of their life and when it is appropriate not to utilise the full force of medical technology.¹²

In today’s society many people are often not willing to accept death as a natural process, willing the medical team to do “everything possible”, failing to recognise the potential harm that this may cause by prolonging the process of dying without any benefit being accrued.

When a decision has been made to offer a person end of life care and take a comfort or palliative approach, it is expected that the medical team will strive to ensure that suffering is relieved by a patient centred approach,¹³ that the patient is treated with dignity,¹⁴ with early identification, impeccable assessment and treatment of pain and other problems be they physical, psychosocial or spiritual,¹⁵ and to help people live as well as possible until they die and to help people die with dignity.

Nutrition and hydration at the end of life

There are fewer topics causing more angst, upset and anger than the lack of provision of food and water to somebody. Food, nutrition and hydration is accepted by many as a basic human right.¹⁶ Everyone understands that without food and water people die.

It is unreasonable not to provide liquids to drink or food to eat. People should be offered drinks and food, depending on their ability and desire to eat and drink. There may be risks associated with this (coughing and choking) but the sense of wellbeing, enjoyment and a wet mouth may trump any discomfort.^17-18

In the terminal phase of illness or as life is coming to its end, people will often reduce the amount they are eating,^19-20 due to body physiology slowing down, and the need for fewer calories (this is termed the anorexia-cachexia syndrome); others may refuse nutrition completely, either because they do not feel hungry or they are taking control of the situation.²¹

If someone stops eating and drinking, do they need to have mental capacity to make this decision? In their systematic review Ivanovic et al. state that “is an action of a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking.” ²¹ 

Mouthcare is an essential part of providing hydration. A dry mouth causes discomfort, making it difficult to swallow. So, use salve for lip care, ensure clean teeth and dentures, and encourage sips of water to keep the mouth and tongue wet. Use a toothbrush on the tongue if need be to remove dried secretions.  A clean mouth is less likely to get secondarily infected.

Parenteral fluids and enteral nutrition

Hydration is an important issue at the end of life. Should parenteral fluids be prescribed? The role of parenteral fluids (intravenous fluids or subcutaneous fluids) is a controversial subject with proponents on both sides. Many national guidelines are supportive of any individual approach.^22-24  Some argue that parenteral fluids should be provided until the last hours,²⁵ whereas others would argue against this.²⁶

In many instances, in the acute care setting, parenteral fluids are often given though the rationale is not always clear. The benefit of providing parenteral fluids is often offset by the discomfort from cannulation, fluid retention and pulmonary oedema.²⁷ If parenteral fluids are required then consider the subcutaneous route.²⁸ Enough fluid can be provided without the need for difficult venous cannulation.

Not providing enteral nutrition to someone may be viewed as not hastening death, but rather as not preventing death from occurring. The benefit afforded by enteral nutrition or hydration by the general public and professionals is often overestimated in people who are dying.²⁹ There is no evidence that supports the need or benefit of insisting on a patient eating more, or of increased enteral nutrition via a nasogastric tube or gastrostomy, either for comfort or prolongation of life,^19,30-31 it may in fact be more burdensome than beneficial.³²

If the sanctity of life is deemed paramount, should the fact of intolerable suffering at the end of life be able to override this? Therefore, if the use of parenteral or enteral nutrition causes suffering (pain, diarrhoea, bloating) with no perceived benefit then it should be withheld.

Eating and drinking with acknowledged risk (risk feeding)

There are times when a person has difficulties swallowing, but when also a decision has been made that it is not appropriate to use enteral feeding.¹⁷ This decision is a positive decision and needs to be a team decision including the patient (if they have capacity), their family (if the patient is happy for this), and the wider clinical team.

Concerns have been raised that staff use the term “risk feeding” due to the fears of aspiration and a consequent pneumonia, when in fact it is more often about the discomfort that may ensure from coughing and choking.^33-34

Clinical teams have instituted care bundles to document decision making from a good practice and governance point of view,^17-18 but any process, pathway or policy should ensure that people are not denied food and liquid or any relevant oral medications.

From a nursing point of view, it is important to take time, offer small amounts on a regular basis and not to be afraid if there is some coughing, and often to wait and try again if not successful.

Medication

As life is coming to an end, it is important to review the need for prescribed medications. Alternative methods of administration should be sought for those medications that are essential and all others stopped.

Decision making

Making the right, or the most appropriate decision is not always easy. To do or not to do; a decision not to act, is still an act. An act of commission (do something to end life) is equal, in effect to an act of omission (do nothing).

The Ethics literature is full of terminology describing the thinking process in decision making (Table 1), many of which will mean little to the person struggling to make the right decision for the person they are caring for. In reality, subconsciously, a mixture of approaches is taken depending on the situation at hand.

 

Virtue	Doing the right thing
Consequential	An action is justified by its outcome
Utilitarianism	The greatest benefit associated with the least harm.
Deontology	Obeying a moral principle
Fidelity	Honesty
Egalitarianism	Care according to need

Table 1: Ethical approaches to decision making

 

Communication with the patient

All decision making needs to be proportionate, as well as medically and ethically justifiable.³⁵ Discussions with families and patients about of end of life and cardiopulmonary resuscitation, are some of the most challenging for clinicians, often because of unmanaged and unrealistic expectations of all concerned.³⁶ In their review Becker et al. detail several tools to help with discussions, including VALUE (value, acknowledge, listen, understand, elicit questions).^37-39

A patient has the legal right to participate in any decision-making process involving their care.⁴⁰ This information must be presented in an understandable format depending on communication ability (education, dysphasia, English not their first language), and they have the right to refuse any offered medical intervention or request the termination of any treatment,^41-42 providing the patient has the mental capacity to do so.⁴³

For some patients this may cause difficulties if their religious (for example Halacha in Jewish Law) guidance suggests otherwise as it may run counter to this.^32,44 Tilse et al. found that there were several factors (including personal characteristics, decision making approach and communication) which resulted in patients being denied this right.⁴⁰

Good communication and involving the patient in their care improves the perception of the quality of care and provides for increased concordance between the patient and the medical team.^32,45 There may be a game of reluctance to discuss- with the team waiting for the patient and family to speak up, and the family and patient waiting for the team to talk to them.⁴⁵

Health care providers have an ethical obligation to advocate for the fair and appropriate treatment of patients at the end of life.⁴⁶ All health care professionals should be open and truthful, providing patients with the amount of information that they wish to know.

There are different levels of understanding; sociological and cultural as well as personal beliefs, resulting in strongly held opinions that interplay when trying to come to a decision.^32,35,47 Although the law in many countries may indicate the primacy of a medical decision, experience suggests that the judicial process does not always support this.

The present consensus in care is that patient autonomy is paramount, but one person’s autonomy could impinge on that of another, as well as that of medical staff. Therefore, any decision taken affecting a person’s care cannot be taken in isolation.⁴⁸

Where a patient does not have the capacity to make a decision, either due to their mental state or medical condition, they may have a legally appointed advocate who has been given authority, by way of being appointed to have lasting power of attorney in health and welfare, to make medical decisions for them.⁴³ If there are differences of opinion between the clinical team managing the care of a patient coming to the end of their life and the patient or their legally appointed advocate, then a second medical opinion can be sought. The ultimate arbiter is the Court of Protection, but this is unlikely to be required in the situation where someone is close to death.

Mental capacity (Mental Capacity Act 2005/2019)

It is important to be aware that mental capacity is not a one-off assessment. It will need to be reassessed for any major decision. In the case of people who are dying, capacity may change daily or during a day.⁴⁹ The use of a validated tool may be helpful to guide the assessment and to record the outcome.

Advanced decision making

The importance of shared decision making in medicine has been increasingly recognised over recent decades, and this is also applicable in nutrition and hydration towards the end of life.⁴⁹ It has been shown that patient participation in end of life decisions leads to increased patient satisfaction, empowerment and less invasive procedures.⁵⁰ However this process can be complicated by the fact that many may lose the capacity to make such decisions towards the end, highlighting the importance of making these decisions in advance.

Advanced care planning (ACP) is the process of joint decision making between patient and healthcare providers, and ensures a patient’s preferences for the future whilst still capacitous are known.⁵¹ It has been found to have numerous benefits in improving end of life care; for example in a systematic review of randomised control trials assessing the efficacy of ACP, Malhotra et al. found that it lead to improved decisional conflict and patient-caregiver congruence in 64% and 82% of studies respectively. ⁵²

Various templates, such as Proactive Elderly Advance CarE (PEACE) or Recommended Summary Plan for Emergency Care and Treatment form,^53-54 are currently in use to facilitate ACP, and we encourage that views of nutrition and hydration should be thought of in these too.

Faith and culture

Nurses and those they will be caring for will hail from a variety of faith and cultural backgrounds. Beliefs and decision making will inevitably be influenced by these and at times could potentially lead to a clash of cultures and or faith. A position paper on behalf of the Abrahamic monotheistic religions was published in 2019.⁵⁵

As death draws near, consideration of particular faith requirements such as the desire for the Last Rites,⁵⁶ the need to die facing Makkah, and someone reciting the Qur’an,⁵⁷ should be considered.

Many will suggest that the hastening of death by the withdrawal of food and hydration is not permissible (in Jewish and Islamic faiths).^32,58 Often, in the Buddhist faith, it is believed that anything that may only postpone death, be futile, and prevent a person from entering the next phase of their life, may be stopped.⁵⁹ Within Hinduism, there are many different influences that may affect decision making by the patient and these may be individual. ⁶⁰ In the Sikh community attitudes towards end of life care may vary greatly, however these will be influenced by the religion’s underlying philosophies including reincarnation and karma.^61-62

Communication with the team

Poor communication within a team may result in an internal team blame game. If team members, particularly those providing direct physical care, are not involved or fail to understand the reasons for commencing end of life care or not providing parenteral fluids, moral harm may occur (table 2).

 

Moral	Decision Made	Understanding of the Facts	Subsequent Understanding of the Decision
Distress	Correct	Correct	Incorrect (action justified but subsequently found to be wrong)
Burden	Correct	Correct	Correct (action justified and remains so)
Harm	Correct	Incorrect	Correct (action justified and remains so, error is in the understanding)
Injury	Incorrect	Incorrect	Incorrect (action not justified and perhaps immoral or even evil)

Table 2

Place of care

It is desirable that people should, when dying, remain at home,⁶⁴ yet many may not.⁴   Nursing staff may feel constrained by the lack of a clear end of life plan (PEACE plan or Advanced Directive), and institutional policies and guidance with poor senior support may result in an unwarranted hospital admission being triggered, and may particularly be so around the eating and drinking, where the resident may have stopped taking food and liquid.⁶⁵

Changing norms around discussing death

If decisions involving preferences in end of life care are to be made then frank discussions between the patient and medical team need to be had.⁵⁴ As mentioned prior many patients may lose capacity to make these decisions towards the end of their life, therefore discussing these matters as early as possible can be important. However, this is often a reluctance, from both the medical team and patients/their families, to discuss death and what it may entail.⁶⁶

There are many factors which contribute to this reluctance; from a more individual level these include fear of saying the wrong thing, lack of confidence in discussing such sensitive issues, and the belief that such discussions may upset the person concerned.⁶⁶ From a wider societal level there may be a reluctance to accept death or to see it as a topic to discuss openly, rather seeing it as a taboo.^66-67 Cultural beliefs including religion may contribute.⁶¹

If preferences around death are to be sought and thus a better death had, then this culture around death needs to be changed. On a smaller scale this can involve health care providers encouraging patients and families to think about and discuss death earlier on, and also provide the necessary training to facilitate this.^53-54,68 On a wider societal level, government and public health agencies need to try and normalise as much as possible discussions around death.^69-70

Conclusion

Death is inevitable, we will all die. However there is much that can be done to care for an individual as they are coming to the end of their life, either due to age or the final stages of a long term illness. Good compassionate, individualised and holistic care will go a long way to comforting the dying person and their family.

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James Dunn, Queen Elizabeth Hospital, Lewisham and Greenwich NHS Trust

Jekatyerina Cár, Queen Elizabeth Hospital, Lewisham and Greenwich NHS Trust

David G Smithard, Queen Elizabeth Hospital, Lewisham and Greenwich NHS Trust and Centre foe exercise, Activity and Rehabilitation, University of Greenwich

Email: [email protected]

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