Nutrition and hydration at the end of life
About this resource
This resource has been developed for you by the Royal College of Nursing (RCN) and is designed to offer you support in your delivery of appropriate end of life care alongside your existing training, with a particular focus on nutrition and hydration.
Who is it for?
This resource is for any registered nurse, student nurse, health care assistant (HCA) or assistant practitioner working in any healthcare setting or specialism. The aim is to give you an understanding of your role when it comes to meeting the nutritional and hydration needs of people with life limiting illnesses. You can work through this resource at your own pace either all at once, or by one of the “bite sized” pieces of learning whenever it is convenient for you.
What is end of life care?
Every year more than half a million people die in the United Kingdom, and most of these deaths occur in hospitals. While some deaths occur suddenly, the majority of deaths occur after a period of chronic illness. During this time people often require ongoing care which may include end of life care.
End of life care is support for people who are approaching death. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers.
Within End of Life care there are few areas that are as medically, ethically, and culturally complex as providing hydration and nutrition to a patient.
Why was the resource developed?
This resource has been developed using information from the 2014 RCN End of Life care survey which showed that staff wanted more education and information around caring for people at the end of life. In addition the resource was informed by an independent review of evidence relating to nutrition and hydration at the end of life and expert opinion. The same issues relating to poor care at the end of life were also identified in the recent Parliamentary and Health Service Ombudsman report, Dying without dignity (2015).
This resource goes some way to address some of the issues raised in these reports.
The content within this resource reflects guidance recommended in the key priorities and principles from the four countries and is therefore applicable and beneficial to nurses across the UK. It also reflects compliance with the RCN’s Principles of Nursing Practice. The resource is not fully comprehensive but provides a broad overview of many topics and is intended to stimulate you into seeking further information in areas of particular interest or pertinence to their area of practice.
This demonstrates the commitments made by the RCN to improve end of life care following more care less pathway (Neuberger 2013).
Learning outcomes
After completing all the sections in this learning resource, you should:
- know why nutrition and hydration is important to an individual with a life limiting illness
- have an improved understanding of how to recognise the changing nutritional and hydration needs of the individual at the end of their life and the impact of these changes on those close to them and how to respond to these
- have improved confidence in communicating and discussing the dying process and its impact on eating and drinking with people reaching the end of life and those close to them
- be aware of any ethical questions that might arise when providing nutrition and hydration support and how to address these
- provide good, clear and straightforward information to patients and their families in regard to their nutrition and hydration care
- be aware of and recognise the barriers or fear individuals and those close to them may feel about discussing the dying process and its impact on eating and drinking
- have an improved understanding of the need for documented evidence of sensitive communication
- know how to communicate and have open discussions with individuals reaching the end of their life and those close to them around nutrition and hydration needs and any decisions relating to the withdrawal of this
- have an improved understanding of the importance of the individual’s and their family’s point of view and experience of end of life care
- have a greater awareness of the impact a person’s cultural and spiritual beliefs has on the management of their nutritional and hydration needs at end of life.
Feedback
We hope you find this resource useful and enjoy using it. Do show it to your friends and colleagues, and let your employers know about it too. We welcome your feedback about this online induction resource and invite you to share your views about your learning experience.
Reflection
We invite you to complete our reflective learning diary which will comply with the NMC revalidation process.
Key messages from Bazian Review
The key messages from the small and limited body of evidence are bullet pointed below. These are to determine what nursing or HCA care practises, related to nutrition and hydration in the last year of life, help the person who is dying to live as well as possible until death.
- There is a huge need for nurses to communicate with and provide practical support for the person who is dying and their relatives in relation to nutrition and hydration at end of life.
- It is important for nurses to recognise that the views of people who are dying and their relatives may differ in this area and discussing and addressing these views may be helpful.
- There is increasing evidence that relatives can find the persons’ reduced oral intake distressing and welcome information and support from healthcare professionals to understand this part of the disease process, and to be relieved from their felt guilt and responsibility.
- It may also be necessary for the nurse to support the person who is dying in balancing eating to please loved ones against the discomfort that this may cause.
- Studies suggest that people who are dying and their relatives have unmet information needs about maximising quality of life relating to food and how to maintain or improve oral intake.
- There is also evidence that people at end of life and their relatives would welcome information about the benefits and risks of clinically assisted hydration and nutrition, so they can be involved in these decisions.
Food is our common ground, a universal experience – James Beard
Getting started
Effectively and sensitively communicating, planning and implementing nutrition and hydration care is at the centre of good end of life care. It is important to be competent and confident when you are supporting individuals approaching end of life and those close to them regarding nutrition and hydration.
Modules
This resource explores the communication, cultural, spiritual and ethical issues that impact on nursing care at the end of life, and the modules below can be followed through in order by using the “next section” icon found at the bottom of each page. Equally, you can navigate this resource by clicking on a particular section that you wish to learn about. Each module is broken up into sub sections to make these “bite sized” chunks easy and simple to digest.
Here is a list of definitions to some of the terms used within this resource.
| Term | Description |
| End of Life | Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months |
| Palliative Care | Palliative care is an approach that improves the quality of life of patients and their families facing caring for a family member or loved one associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. |
| Nutrition | The process of providing or obtaining the food necessary for health and growth |
| Hydration | The process of providing an adequate amount of liquid to bodily tissues |
| Clinically assisted nutrition | Includes intravenous feeding, feeding by naso-gastric and by percutaneous endoscopic and radiologically inserted gastrostomy (RIG) feeding tubes through the abdominal wall |
| Clinically assisted hydration | Intravenous or sub-cutaneous fluids through a “drip” (both of these terms do not apply to providing assistance with eating and drinking) |
| Best Interests | “May be interpreted as meaning that a patient should not be subjected to more treatment than is necessary to allow them to die peacefully and with dignity (GMC End of life care: Legal Annex) |
| Cachexia | Involuntary weight loss (more than 5% of baseline) with a bigger loss of muscle than fat. |
| Last few days of life | When death is expected within the next few days or hours |
Roles and responsibilities
Staff will have many responsibilities in end of life care which will range from including:
- having sensitive conversations with individuals about their care and preferences
- recognising any changes in conditions
- offering compassion and support to the patient and those important to them.
This will require a broad variety of skills and an awareness of the values which underpin this behaviour. Compassionate care has to be at the forefront of all nursing and even more fundamental in the provision of caring for dying people and those close to them.
Source: NHS England – Our Culture of Compassionate Care.
When providing end of life care, ensure you:
- Treat people compassionately
- Listen to people
- Communicate clearly and sensitively
- Identify and meet the communication needs of each individual
- Acknowledge pain and distress and take action
- Recognise when someone may be entering the last few days and hours of life
- Involve people in decisions about their care and respect their wishes
- Keep the person who is reaching the end of their life and those important to them up to date with any changes in condition
- Document a summary of conversations and decisions
- Seek further advice if needed
- Look after yourself and your colleagues and seek support if you need it
Nursing care
“Palliative Care is about putting life into a patient’s days not days into their lives” – Nairobi Hospice. Nursing & Health Survival Guide: Palliative Care (2014).
Although at times challenging and emotionally demanding, when you are supported to have the right skills, knowledge and attitude, end of life care can be very rewarding.
End of life care is provided in a range of settings which include care in the community, a hospital, care home, hospice etc. Regardless of care setting, the quality of care should be of the highest standard.
When it is recognised by nurses and doctors that a person may be dying, this needs to be communicated in a sensitive and compassionate way to the dying person (as appropriate) and those close to them.
How we communicate with the person who is dying will depend on each individual case. This is extremely sensitive area and should be patient led, with gentle, honest answers using language the person understands. At no time should the conversation continue, if there is any indication that the patient doesn’t want to continue. Staff should always be mindful that some patients will not want this conversation and therefore it should not take place. However, it is crucial that conversations should take place with families to prepare them for impending death.
Care of the person
When you provide good nursing care for those at the end of their life, you will be providing holistic care including providing physical, emotional, psychological and spiritual support. The individual may be a patient, but remember they are also another human being that may be feeling lost, confused and have questions about their nutritional and hydration needs. Equally, the person may not come to you with questions, preferring to keep them to him or herself, or discuss with another person of their choosing. It’s important to let the person remain in control of who they wish to share these issues with. Don’t forget that those close to the individual may also be looking for support and information.
It is important to be sensitive to people’s needs in relation to nutrition and hydration. If someone has a question, try your best to answer it if you are able, or make sure you seek advice from a more senior member of staff if you aren’t sure.
Understanding the dying process
Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface from all those involved.
Recognition of dying is actually quite complex. This is acknowledged in the literature and in reports regarding end of life care, such as More care, less pathway (Neuberger 2013) and Dying without dignity (Parliamentary and Health Service Ombudsman, 2015).
It is useful for staff to use prognostic indicator tools in the last year of life. For example, the Gold Standards Framework (GSF) and the Palliative Performance Scale 2 (PPS).
When it is recognised by nurses and doctors that a person may be dying, you then need to communicate this in a sensitive and compassionate way to the person and those close to them. It is also important to communicate why it is only necessary to provide minimal hydration.
A key part of the nurse’s role is being able to come alongside the person who is dying and those close to them and to support them throughout what is a natural process.
There are physical signs of the natural process of the person’s body gradually slowing down. Sometimes these signs appear a few hours before death, and sometimes it can be a few days. We look further into the signs of dying in another section of this module and the impact this has over nutrition and hydration.
Seeking support
Caring for people at the end of their life can be rewarding, however it can also be emotionally demanding at times. Peer to peer support, providing a supportive workplace, using reflective practice supervision opportunities, defusing and debriefing are all ways of dealing with these emotions.
There are places where you can go to get support if things are getting to much. Consider speaking to your manager, occupational health or spiritual care team in the first instance.
Principles of record keeping
The overall principles of record keeping, whether you are writing by hand or making entries to electronic systems, can be summed up by saying that anything you write or enter must be honest, accurate and non-offensive and must not breach patient confidentiality. If you follow these four principles, your contribution to record keeping will be valuable.
>More specifically, you should always ensure that you:
- handwrite legibly and key-in competently to computer systems
- sign all your entries
- make sure your entries are dated and timed as close to the actual time of the events as possible
- record events accurately and clearly – remember that the patient may wish to see the record at some point, so make sure you write in language that he or she will understand
- focus on facts, not speculation
- avoid unnecessary abbreviations – as you’ll find, the health care system uses many abbreviations, but not all workplaces use the same definitions: for instance, ‘DNA’ means ‘deoxyribonucleic acid’ in some places, but ‘Did Not Attend’ (meaning a patient who does not show up for an appointment) in others – avoid abbreviations if you can!
- record how the patient is contributing to his or her care, and quote anything he or she has said that you think might be significant
- do not change or alter anything someone else has written, or change anything you have written previously; if you do need to amend something you have written, make sure you draw a clear line through it and sign and date the changes
- never write anything about a patient or colleague that is insulting or derogatory.
When you’re writing, always follow the principles described in the section written communication and remember, if you find something you feel is significant when you are working with a patient, your first duty is to report it to the registered nurse in charge before you would consider writing it in the patient’s record. Always report first, record later.
Nutrition and hydration
Meeting the basic needs for food and drink is an important part of caring for someone coping with a life limiting illness. To do this successfully requires sensitivity and clarity.
It is essential that the person and those close to them, are at the centre of any care planning and decisions about nutrition and hydration. It is important to understand and convey the reduced need for food and drink as the person approaches their final days. This communication is pivotal in supporting those close to the individual in understanding the dying process.
A greater understanding of the importance of adequate food, drink and nutritional care is needed as this is an integral part of care, particularly as the person approaches their final days.
What are the fundamentals?
The NMC describe fundamentals of care as:
The fundamentals of care include, but are not limited to, nutrition, hydration, bladder and bowel care, physical handling and making sure that those receiving care are kept in clean and hygienic conditions…making sure you provide help to those who are not able to feed themselves or drink fluid unaided (NMC, 2015).
Key points
When you are providing nutrition and hydration support at at the end of life, it is important to remember:
Sensitive communication may be required about why a drip may or may not be needed in the last few days of life
Loss’ of the ability to eat and drink and its meaning to those close to the dying person
When people are bereaved often the first story they tell is about the illness of their loved one or the events leading up to their death.
In the introduction to his book Love and Loss, Colin Murray Parkes writes that when the death of a loved is predicted we can grieve for their loss before it happens. He goes on to describe however that there is an important difference between the grief that comes before and that which follows death, observing that the grief which precedes loss intensifies the attachment and greater preoccupation that the relative has with the person who is dying.
Recognise the grief that comes before death.
This highlights the need for nurses to have an understanding of the stress and distress of relatives as they watch over a loved one who is close to death.
How a person will feel when they can no longer swallow to eat and drink is something that can cause anxiety to friends and relatives and also staff.
When we as nurses are aware of the importance of eating and drinking, with its biological, physical, social, emotional, cultural and spiritual relevance in life, it is perhaps easier to understand the impact on those closest to a dying person when the desire or ability to eat and drink in a way that sustains life is compromised by serious ill health and the process of dying.
In situations where a person has been coping with a serious or life threatening illness, meeting their basic needs for food and drink may have been a challenging aspect of the condition for the person and their family for some time. Perhaps artificial methods for maintaining nutrition and hydration were required to maintain their quality of life.
In contrast, following a short or acute illness that results in the person suddenly no longer being able to eat and drink unaided, the significance and meaning of this in terms of maintaining life will not be lost on those closest to the person.
In any situation or circumstance where it becomes apparent that a person is nearing the end of their life, nurses have the opportunity and responsibility to support discussions with the dying person, if possible, their family and clinical colleagues on the subject of nutrition and hydration.
Changing landscape of the dying process
The last days and hours of someone’s life is an ever changing landscape and regular review of the persons needs is required. Decisions to use or discontinue artificial hydration or nutrition should be based on what is best for the individual. When people are able to eat or drink a little by mouth they should be helped to do so and their wishes respected when they choose not to.
The process of ‘meaning reconstruction’ that grieving people go through after a loss to make sense of what has happened and their natural desire to create a ‘plausible account’ of such a significant event in life has been described by Robert Neimeyer. More information can be found in Loss and its Relevance to food and fluid at End of Life.
Making sense of what is happening
Before death we can contribute to how families make sense of what is happening around them and what may happen to their loved one as they die. Therefore communicating with those closest to the dying person pre-bereavement, in a way that helps them understand the loss of capacity to eat and drink as part of the dying process, is an essential component of compassionate care.
Sensitive exploration of their views, feelings and what they understand about the situation e.g. when artificial means of maintaining nutrition and hydration place a burden on the dying person and may no longer be in their best interests, acknowledges their special attachment to the dying person and will become part of the story of the days leading up to their loved one’s death.
The legacy that we leave with those left behind
The benefit to families pre-bereavement of the nurse in helping both the dying person and those close to them understand the situation as it evolves and caring for them with intelligence, insight and understanding will contribute greatly to the experience of relatives and how they will grieve after death for the loss of their loved one. This is the legacy of nurses to those we care for.
All patients should be offered food and drink of adequate quantity and quality depending on their ability to take it, and also to any assistance they need to eat and drink. Malnutrition and dehydration can be both a cause and consequence of ill health, so maintaining a healthy level of nutrition and hydration can help to prevent or treat illness, symptoms and improve treatment outcomes for patients. It is important to keep the nutrition and hydration status of patients under review. You should be satisfied that nutrition and hydration are being provided in a way that meets your patients’ needs, and that if necessary patients are being given adequate help to enable them to eat and drink.
If you are concerned that a patient is not receiving adequate nutrition or hydration by mouth, even with support, you must carry out an assessment of their condition and their individual requirements.
You must assess their needs for nutrition and hydration separately and consider what nursing care actions are required and document your assessment and actions in the individuals end of life care plan.
As part of your assessment you should consider if there is a need for artificial nutrition and/or hydration and discuss this with the doctor and multidisciplinary team.
If you think the person requires a further assessment of their nutritional needs, make sure you report this to the person in charge of their care.
Nutrition and hydration in the last few days
All patients are entitled to food and drink of adequate quantity and quality, and also to any assistance they need to eat and drink.
Needs will change in the last few days as the body’s processes slow down and stop.
If you are concerned that a patient is not receiving adequate nutrition or hydration by mouth, even with support, you must carry out an assessment of their condition and their individual requirements.
You must assess their needs for nutrition and hydration separately and consider what forms of clinically assisted nutrition or hydration may be required to meet their needs.
As the dying person’s ability to swallow and the plan of care changes it is essential that this is explained to the relatives and communicated to all care staff including ward volunteers/ housekeepers/ward clerks and catering staff.
Where a patient has become mainly unresponsive and their prognosis is expected to be short days or hours, the care team with the patient/relative/LPA may agree that comfort measures only should be the main focus of care and decisions will need to be made as to when to stop giving oral nutrition and oral hydration as the risk and distress caused to the dying person outweighs any potential benefit.
Sensitive communication may be required about why a drip may or may not be needed in the last few days of life.
When death is close at hand
Not everyone will display all of the signs but this is often how the body prepares for the final stages of life:
Below is a clip that demonstrates how vital it is for staff to explain when intravenous fluids are no longer appropriate.
Changes in the last year
As the individual approaches the end of their life their body will undergo changes in the last year. It is important that you are aware that their condition is not fixed but look out for any changes and respond to their needs by adapting the care you deliver.
| Signs of approaching death | Advice |
|---|---|
| Sleeps more and difficult to wake at times | Plan conversation times for when the person seems more alert. |
| Loses appetite and may ‘forget’ to swallow | Offer small servings of favourite foods or drink without forcing. At this time the body has minimal needs. |
| Becomes confused about time or may not recognise familiar faces | Speak calmly. Remind the person of the day, time and who is in the room. |
| Becomes restless, pulls at bedclothes, has visions of people or things that aren’t really there. They may develop a fixed stare | Leave a soft light on in the room. Provide reassurance and avoid physical restrictions where possible. Even if the person cannot respond, don’t assume they can’t hear you – hearing is the last sense to be lost. |
| Loses control of bowels or bladder | This does not usually occur until death is close. The amount of urine will decrease or stop as death nears. The district nurse can advise on how this can be managed. |
| Secretions collect at the back of the throat and sound like a rattle | This is because the person cannot swallow saliva but does not mean they are uncomfortable.Turn the person on their side or raise the head of the bed. Sometimes medication can be given to help – ask the district nurse or your community nurse. |
| Arms and legs cool as the circulation slows down. Sometimes one side of the body will be warm and the other cold. Face becomes pale and feet and legs adopt a purple-blue appearance | Use just enough coverings to keep the person comfortable. |
| Breathing becomes irregular and even stops for short periods. The pulse becomes fast and irregular | There is no need to become alarmed about this. It causes no distress to the patient. |
Starvation and cachexia
It is essential that you understand the difference between Starvation and Cachexia.
Cachexia manifests with extreme weight loss, usually with disproportionate muscle wasting. Being able to differentiate this from other syndromes of weight loss is vital to prompt recognition and effective management of Cachexia. Weight loss resulting from starvation occurs as a direct result of caloric deprivation.
In starvation, the body tries to conserve energy and nutrients through mostly using fat stores to produce energy, in an attempt to preserve protein and muscle. In Cachexia the body uses mostly protein/muscle stores to produce energy.
Cachexia is defined as involuntary weight loss (more than 5% of baseline) with a bigger loss of muscle than fat. Cachexia is common in severe End of Life illnesses, including advanced cancer.
Starvation is the result of a severe or total lack of nutrients needed for the maintenance of life.
What causes Cachexia?
The body’s inflammatory reaction and tumours produce proteins that decrease motility of the stomach and intestines as well as increased muscle breakdown. This results in reduced intake of food and nutrients and an accelerated weight loss.
Why do you need to know?
Cachexia can occur in different stages dependant on how the person is clinically and their circumstances: pre-cachexia, cachexia and refractory cachexia. At all stages an impeccable assessment needs to be carried out to determine functional or anatomical barriers within the gastro-intestinal tract, or symptoms such as breathlessness or incident pain affecting the person’s ability to eat (Radbruch et al 2010). All patients, regardless of setting, should have equal access to appropriate assessment and management of cachexia.
Refractory cachexia is where reversal of weight loss seems no longer possible due to advanced progressive disease and here the burden and risks of artificial nutrition are likely to be greater than the benefits. It is here that care needs to have emphasis on alleviation of the suffering linked with cachexia, such as good symptom management with appetite stimulation, where appropriate, and treatment of nausea and vomiting (Radbruch et al, 2010).
It is important that time and support are given to relieve any eating-related distress of patients and their families. Research has shown that with cachexia the accompanying symptom of anorexia can cause distress, tension and arguments among patients and their family carers, the latter who have a desire to promote food for the person’s survival without understanding the futility (Reid et al, 2009).
Remember the P’s
The 7 P’s will help you in your delivery of nutrition and hydration nursing care. In this section you will learn about each ‘P’ and how this relates to end of life care.
Preference
“When I arrived here, staff filled in a form with my daughter’s help. They have followed it ever since. Meals follow a routine I could set my clock to. No freshly baked bread now, just that thin sliced stuff. I’m sure it’s good for you but it’s just not the same. I will get lukewarm tea in a minute so I can drink it fast and they can get me into bed. My daughter said I liked black tea when they filled in that form, but after drinking it warm from a plastic mug I would love a hot black coffee in a proper cup.” – [Patient in Hospice]
Establish likes and dislikes
Take time to understand your patients likes and dislikes when it comes to food and drink. And regularly check with them and those around them to confirm that their preference hasn’t changed.
Work together to provide food and drink when desired by the person.
The slowing down of eating and drinking is natural to the dying process, so is the ‘fighting’ against it. Food can cause more discomfort than pleasure, so everyone needs to work together to ensure the needs of the patient are met.
We can help families understand what is happening around them and what may happen to their loved one as they die. Therefore an essential part of compassionate care is communicating with the patient and those closest to them. This way it can help them understand the loss of capacity to eat and drink as part of the dying process.
Also a patient may feel they have to eat and drink to make those close to them feel better, causing them to feel stressed and discomfort.
Decisions about nutrition and hydration measures should be made with the support of the multi-disciplinary team in partnership with the person and those close to them, where possible. The following are questions which can be considered in this decision making process:
Are the patient’s wishes known?
- How will artificial hydration and/or nutrition benefit the patient?
- Is eating and drinking normally causing the patient discomfort?
- Is the patient keen or able to continue eating and drinking?
- Have the risks and discomforts linked with artificial nutrition and hydration been considered?
Palatable
Food must be at the right temperature for each person. At end of life, patients can develop unusual tastes, for example, wanting spicier food or preferring a meal cold. The skills of an enthusiastic chef and the advice of a dietitian should help with this.
Food should be what the person fancies, it can be helpful to add cream/butter to the food to add calories.
Ensure you understand the needs of the person
Food, and the service of food, is now regarded as an essential part of treatment, meaning that the actual preparation of food for the patient is also of great importance. The need for a greater understanding in the importance of the patient meal experience and nutritional requirements is increasing.
Decisions
When making decisions about the nutrition and hydration needs of a patient it’s important to realise that every situation is different and rigid policies are hard to follow. Decisions must be made in a person’s best interests if they are without the capacity to make decisions about their nutrition or hydration.
- Monitor and review any nutritional intervention and care plan.
- Reassess continually to ensure your patient is not at nutritional risk.
- Observing your patient will ensure that you notice any changes in their appetite or ability to eat and drink.
- Effective record keeping will ensure that any subtle changes in your patient’s condition are monitored and changes in their nutrition and hydration care plan can be made as required.
- Support your patient by helping them to eat or drink.
Making changes
Any changes in nutrition and hydration should be done sensitively and at all times keep the patient and relatives informed of decisions made and the reasons why this approach has been taken.
Many relatives and carers may think withholding fluid or nutrition will cause distress to the patient. For example, the removal of a water jug from beside the patient because they are unable to drink from a beaker can be distressing for relatives. It can be seen as a withdrawal of care, and sometimes relatives or carers will continue to request for hydration. You must explain sensitively why the hydration using this method has been withdrawn and how it has been replaced.
Presentation
Food should be visually appealing and appetising
The presentation of food is important. There should be a pleasant atmosphere, food should look appealing, it should be varied at the correct temperature and in the appropriately sized portions for the patient.
Portions
Smaller plates for smaller portions
The amount of food you serve should be appropriate for each individual.
The use of small plates can aid in an individual’s motivation to eat. An over-large portion for the individual on a large plate can put the patient off attempting to eat the food.
Seeing a small plate of food can seem more manageable, and it is our goal to make sure the patient’s are comfortable when eating. Something as simple as using a smaller plate can encourage a patient to eat.
As a person nears the end of their life, their metabolism slows down and their body no longer needs food, as it can’t digest it well or absorb the nutrients from it. At this stage, it’s important the person doesn’t force themselves to eat, and it’s okay if they don’t. The ability to eat and drink may be lost in some conditions and the patient may require additional support.
Food dense in calories is often poorly absorbed and may produce diarrhoea, causing discomfort and distress to the patient.
The normal swallowing process is controlled by the swallowing reflex. Swallowing, is the process by which fluid or food is transported from the mouth to stomach for digestion. If this mechanism fails and the bolus is misdirected into the airway, then choking or pulmonary aspiration may occur.
When the process of swallowing is disrupted the risk of aspiration increases greatly. Aspiration has very serious health implications, and if not managed properly can result in respiratory tract infections.
Other risks to health linked to Dysphagia are malnutrition, dehydration and asphyxiation. Swallowing problems can involve the oral cavity, pharynx, larynx and/or oesophagus.
Patients may need assistance to help them swallow and their food will need to be prepared so they can swallow without it causing distress.
Food and fluid consistency
Thickened fluids are often used for people with Dysphagia. The thicker consistency makes it less likely that an individual with Dysphagia will have fluids from the gastrointestinal tract passing into the larynx and lower respiratory tract while they are drinking.
Below are the recommended modified consistencies by Speech and Language Therapists.
LIQUIDISED : A thin liquid of a single consistency, with no lumps.
THIN PUREE : A moist, smooth consistency which does not require chewing and cannot be eaten with a fork. There are no bits or lumps and it does not hold shape. A thin puree should have a consistency like thick double cream.
THICK PUREE/ SMOOTH: A moist, smooth consistency, like a mousse, which does not require chewing. There are no bits or lumps, and it should be thick enough to form furrows with the prongs of a fork. A thick puree can be piped or moulded. Food moulds can be used to help shape puree and mashed food to enable it to look like a natural meal which is more appetising.
PRE-MASHED: A moist, fork-mashable diet which has been ready mashed before the person eats, should require very little chewing. A pre-mashed meal must be well mashed, and in acute hospitals this may come ready prepared. In other locations the food must be mashed well with the client before eating, and gravy may be added as appropriate.
FORK-MASHABLE: These are soft, tender, moist foods that require some chewing by the patient. Pieces of meat must be no bigger than 1.5 cm, and the meal should be mashable with a fork. Tender casserole meats may be suitable.
Fork-mashable meals usually require a thick sauce and should have no stringy, dry, crispy or crunchy bits. There should also be no skin, bone, gristle, seeds, pips or shells.
SOFT OPTIONS FROM NORMAL MENU: These are soft foods, which may include fork-mashable meals, but also include soft sandwiches with moist fillings and the crusts removed. These foods require the person to have reasonable chewing and the ability to clear the mouth.
Soft options from the normal menu can be suitable for people with no teeth or more mild swallowing difficulties.
NORMAL DIET: A normal diet includes all foods from a normal menu. People who can manage sweets, crisps, dry and chewy foods will be on a normal diet. If someone is progressing from a soft diet to a normal diet it is important to monitor what they can manage.
Let the person take their own time
Eating and drinking is a normal part of daily living, in addition to the provision of nourishment, hydration and comfort. It is recognised that the oral intake of both food and fluids can diminish significantly at End of Life, combined with weight loss and muscular weakness.
It is important that time and support are given to relieve any eating-related distress of patients and their families. Research has shown that with cachexia the accompanying symptom of anorexia can cause distress, tension and arguments among patients and their family carers. Family carers often have a desire to promote food for the person’s survival without understanding the futility.
Supporting family members is important for their transition of being able to let go of the felt responsibility to provide food for their loved one who is dying. Through the provision of appropriate information and education family members can be gently brought to an understanding that loss of appetite and desire for food is part of the disease and deterioration process.
Position
Ensure you and the person being assisted are in a comfortable position for eating
People should be able to eat and enjoy their meals in a comfortable environment, and staff should be focused on encouraging and supporting a safe meal experience.
The key principle of providing a conducive eating environment and Protected Mealtimes is that activity is focused on the meal and the individual. Staff are encouraged to undertake a pre-meal service check with the catering team to clarify who is eating, if any special diets are required and who may need assistance during the meal service.
Nursing staff must be involved in the delivery of the whole meal service. The key aspects of Protected Mealtimes for nursing and care staff are:
Making sure that the environment encourages eating
- Clearing table tops of clutter
- Appropriate music
- Ability to sit with friends/family as appropriate
- Enable those that may be distracted to sit alone
Providing assistance
- Opening packages
- Assisting people to make their meal choices
- Enable people to control their portion size
- Ensuring that people can reach their meal
- Ensuring people can assist to serve where appropriate
- Physically assisting people to eat their meal
- Ensuring adequate diet and fluid intake
Sit down with the person if providing assistance with feedback
It is important that the patient is assessed by a physiotherapist or occupational therapist for seating and advice on utensils.
Provide
Good mouth-care before and after eating
As the dying person’s oral intake decreases care should include regular mouth care performed with sensitivity and compassion. The care giver should continue to explain to the dying person and relatives the plan to carry out mouth care.
Providing good mouth-care is essential to ensure people feel as comfortable as possible.
Your patient may develop problems with their mouth such as dryness, ulcers or an infection. These problems can sometimes be made worse by the medication they are taking.
If the dying person closes their mouth shut during attempts to give mouth care then this should be taken as the dying person’s indication that mouth care is not wanted at that time and mouth care should cease and be offered again at another time. Some family members may like to be involved in mouth care and should be supported by caregivers to do this.
Steps for good mouth care:
- If possible sit the patient in a suitable chair with their feet firmly on the ground
- If the patient is bed bound raise the bed to an incline and use pillows to support the back, head, neck and shoulders. Tilt the head forward and to one side to assist drainage
- For patients in bed with unilateral facial paralysis, the head should be tilted away from the affected side
- A smear of non foaming toothpaste on a dry toothbrush is advisable.
- Chlorhexidine Gluconate gel (does not foam) may be used as an alternative to toothpaste. It will also help to control plaque bacteria
- Encourage the patient to spit into a bowl or basin to remove any excess toothpaste
- An aspirating toothbrush can be used for individuals who are totally Nil by Mouth. These are specialised products and must be fitted to a suction unit at the bedside or to a portable unit
- Suction will be required to aspirate oral fluids and debris. (Aspirating tooth brush connected to a manual pump)
For medically compromised individuals or those with complex needs you may need to modify your approach.
Nutrition and hydration strategies
There are some simple strategies that you can follow to ensure you meet the needs of the patient and those close to them. When the desire to eat and drink is diminished the 7 P’s will help you in your delivery of End of Life care in relation to nutrition and hydration. There are also useful acromnyms such as the FOOD & DRINK acronym which can help you in your practice.
Use the FOOD & DRINK acronym to help you in delivering care:
- F first
- O opportunity to…
- O offer
- D drink to patient & carer
&
- D discuss & document the
- R reduced need for food & fluid based on…
- I individual assessment of
- N needs on an ongoing basis
- K keep gently checking understanding and communicating any changes to comply with the key priorities & the key principles of end of life care
And consider
- C communication at every step
- O organisation and co-ordination of care
- M multi – agency working
- F family /carers to be included
- O oral hygiene
- R recognising dying phase
- T training appropriate to role
- C care planning
- A assessment of individual needs
- R respect and dignity
- E empathy – support realistic expectations of care and what to expect in preparing loved ones for the inevitable
Assessments and Observations
Observation
- Make sure that people are eating
- Ensure that people have the appropriate food and fluids
- Regularly assess and monitor people for swallowing problems
- Note any changes in patient’s appetite or condition that may effect their nutrition and hydration needs.
Monitoring/assessment
- Record and monitor food and fluid intake where appropriate
- Referral to the appropriate healthcare professional, where necessary for assessment, e.g. dietitian or speech and language therapist.
At the end of the module you will find a knowledge check where you can review everything you have learned in this section.
Effective communication
Communication is a fundamental component of nursing in the provision of end of life care. Some people feel uncomfortable talking about death, but when you’re taking care of a patient who is dying it becomes necessary and beneficial to communicate clearly, and therefore it is essential to open up these conversations.
Good communication enables staff to establish the person’s priorities and wishes, supporting them to make informed decisions. It also provides an opportunity to explore any anxieties or gaps in understanding of the situation, can reassure patients and their families, and alleviate or reduce anxiety and distress.
As a patient approaches the end of their life, talking with the person and those close to them in advance will help to prepare them for the lessening need for food, and particularly fluids. Therefore communicating with those closest to the patient in a way that helps them understand the loss of ability to eat and drink as part of the dying process, is an essential component of compassionate care. Good communication will help them understand that not wanting food and drink at end of life is a natural part of the process.
Those close to the person at the end of their life can play an important role in keeping their loved one comfortable with mouthcare and offering sips of fluid.
Document the person’s wishes about the type of care they wish to receive, and check whether they have appointed an individual to make decisions if they’re unable to do it themselves.
Ongoing communication with the dying in a respectful and dignified manner should continue even when the person is unconscious as their sense of hearing may be maintained until death.
Remember in holistic end of life care it is “the little big things that matter”. This may be offering to sit with someone for a period to talk about or with the dying person, or raising the height of the bed for a relative to be in a more comfortable position to attend or be close to the dying person. Please also consider a risk assessment regarding the use of bed rails, as these may be a barrier at this very intimate time.
The following clip demonstrates the value of team working and involvement with families by using anticipatory care approach.
Sensitive conversations
In delivering end of life care there will likely be a number of sensitive conversations with individuals approaching the end of their life and those close to them. It is important to be able to initiate, facilitate and respond in these sensitive situations.
End of life care discussions about nutrition and hydration, particularly towards the end of the life, with patients and their families won’t always be easy. Sensitive explanation may be required to enable the family to understand that needing less and less food and fluid is a natural part of the dying process and, indeed, attempting to give these when they are no longer needed might cause distress or exacerbate symptoms.
The last days and hours of someone’s life is an ever changing landscape and regular review of the persons’ needs is required. Constant communication is vital to ensure everyone understands what is happening and why decisions have been made. Decisions to use or discontinue nutrition or hydration should be based on the individual’s condition.
When people are able to eat or drink a little by mouth they should be helped to do so and their wishes respected when they choose not to. Food choices should be offered to the patient, such as ice lollies.
In some situations a persons’ requirements for food and fluids may have been managed by clinically assisted means that might have been in place for some time. The dying person and those close to them should be involved in discussions and decisions to taper or stop these forms of support when there is evidence that continuing may no longer be of benefit to the person.
Less experienced nursing staff are likely to find these conversations difficult on their first few occasions, and may struggle with what to say or how to say it.
The following clip demonstrates the importance of leadership on the ward.
Communication with loved ones
The care of family members becomes ever more central to the holistic care of the dying person. Their prime need is to be reassured of the patient’s comfort.
Provide regular opportunities for the family member to understand or be updated on the condition, treatment and or care given to the patient. Consider at what pace family members may like to know what changes to expect and how they will be managed. Make the family feel welcome at all times and consider what arrangements can be made to offer them space to rest and eat and drink close by. Some family members may wish to stay with the patient continuously or others may wish to be called back if death is close by. Some may wish to be involved in direct care giving. Provide advice and support as needed.
The benefit to families pre-bereavement of the nurse in helping both the dying person and those close to them understand the situation as it evolves and caring for them with intelligence, insight and understanding will contribute greatly to the experience of relatives and how they will grieve after death for the loss of their loved one. This is the legacy of nurses to those we care for.
This clip demonstrates of providing information as the person is actively dying.
Phone conversations
There will be times where you need to have a sensitive conversation over the phone. It can help to be aware of scenarios like the one outlined below, and how to approach them.
Ensure you have:
- Checked each person’s understanding of the situation
- Ensure you have everyone up to date on the current situation
- Addressed any sensitive issues you think might exist
- Considered any gaps in communication which might exist – either between the individual who is dying and those close to them, between teams or organisations
- Identified any specific communication needs of individuals, eg. deaf or partially deaf
For further information on communication, please see the communication section in First Steps: http://rcnhca.org.uk/top-page-001/
Helpful strategies
- Privacy. Is it appropriate to talk to your patient or relative in an open ward?
- Timing. Find a time when your patient is feeling calm and relaxed, and also when those close to them are settled and haven’t just arrived.
- Prompts. Listen to what the person is saying as there may be times in the conversation where prompts could lead you to discuss nutrition and hydration.
- No euphemisms. Using the words ‘dying’ or ‘die’ is honest and accurate.
- Watch and learn. Watch how more experienced nurses communicate with their patients, and talk with them about it afterwards.
- Open questions. Questions beginning with “What” or “How” can help encourage someone to give more than single word answers. Allowing time after asking the question gives the patient or family member time to consider their response, and asking if there is something else they wish to say can encourage further conversation.
- Additional help. Is there a need for an interpreter or other aids to enable communication to and from the person? Use of accessible information like pictures and straightforward language can be helpful.
- Summarise. Recapping what has been said to the patient or their family can be useful and even prompt them to add something else. It will also give them confidence that as a professional you are genuinely concerned.
- Don’t be afraid of silence. Using pauses can encourage the person you are speaking with to open up more. Showing that you are listening and pausing for responses will allow the person time to think and they are likely to give a more full response.
- Read. Is there any documentation about the patient’s preferences? Anything you need to know that will affect the situation?
- Write. Sometimes your patient may have a number of issues. Asking permission to write these issues down will help you fully understand them and help to prioritise them.
Body language
It is important to remember that communication is not just about what you say or hear but also about your body language – the expressions you make or how you stand. For example, closed body language such as standing with crossed arms will make a person less likely to want to approach you than when you are smiling at them. It is important to be aware of what your body language says to the people around you.
Helpful strategies
- Privacy. Is it appropriate to talk to your patient or relative in an open ward?
- Timing. Find a time when your patient is feeling calm and relaxed, and also when those close to them are settled and haven’t just arrived.
- Prompts. Listen to what the person is saying as there may be times in the conversation where prompts could lead you to discuss nutrition and hydration.
- No euphemisms. Using the words ‘dying’ or ‘die’ is honest and accurate.
- Watch and learn. Watch how more experienced nurses communicate with their patients, and talk with them about it afterwards.
- Open questions. Questions beginning with “What” or “How” can help encourage someone to give more than single word answers. Allowing time after asking the question gives the patient or family member time to consider their response, and asking if there is something else they wish to say can encourage further conversation.
- Additional help. Is there a need for an interpreter or other aids to enable communication to and from the person? Use of accessible information like pictures and straightforward language can be helpful.
- Summarise. Recapping what has been said to the patient or their family can be useful and even prompt them to add something else. It will also give them confidence that as a professional you are genuinely concerned.
- Don’t be afraid of silence. Using pauses can encourage the person you are speaking with to open up more. Showing that you are listening and pausing for responses will allow the person time to think and they are likely to give a more full response.
- Read. Is there any documentation about the patient’s preferences? Anything you need to know that will affect the situation?
- Write. Sometimes your patient may have a number of issues. Asking permission to write these issues down will help you fully understand them and help to prioritise them.
Body language
It is important to remember that communication is not just about what you say or hear but also about your body language – the expressions you make or how you stand. For example, closed body language such as standing with crossed arms will make a person less likely to want to approach you than when you are smiling at them. It is important to be aware of what your body language says to the people around you.
Cultural needs
You can address cultural and religious needs by communicating with people about what is important to them.
Each person will have cultural, spiritual and religious beliefs that will shape the care you give. Be mindful that:
- for some people spirituality may be linked to a belief system and for others it may be about finding meaning in what is happening
- having a conversation and listening to people will help you understand and meet their needs
- you don’t need to share a person’s values to respect them
- a person may have rituals that they may need you to support them with before or after death
- you won’t know what’s important to people unless you ask them
- it is not possible to provide all the answers and a person may need further support by referral to a specialist team
The following clip demonstrates the impact of not respecting cultural values.
The following clip demonstrates how staff can respect cultural values.
Tips
Use the CULTURE acronym to help you deliver care.
The right to food and drink
Our access to food is a human right, this protects the right for us to feed ourselves, with sufficient food available to meet our dietary needs and our dignity is maintained.
Our right to food protects the right of all human beings to be free from hunger, food insecurity and malnutrition.
Decisions about assisted nutrition and hydration measures should be made with the support of the multi-disciplinary team in partnership with the person and those who matter to them, where possible.
The following questions can be considered in this decision making process:
- Are the patient’s wishes known?
- How will artificial hydration or/and nutrition benefit the patient?
- Is eating and drinking normally causing the patient discomfort?
- Is the patient keen or able to continue eating and drinking?
- Have the risks and discomforts linked with artificial nutrition and hydration been considered? (Watson et al, 2009)
Equality and human rights
Patients who are dying must receive the same standard of care as all other patients, and have the right to be treated with dignity and respect throughout the course of their care. Their privacy and dignity must be respected and good quality care should be provided in comfortable surroundings. Patients and those close to them must be treated with understanding and compassion.
Ethical considerations
Supporting those who are approaching the end of their lives, to maintain nutrition and hydration that is appropriate to their individual needs and preferences, is a vital component of palliative and end of life nursing care. However, such issues are often complex and involve ethical considerations. Decision making requires impeccable holistic assessment from the multidisciplinary team, led by a senior experienced clinician, together with the use of objective ethical principles and reasoning.
This toolkit provides a simple framework for nurses and other members of the multidisciplinary team to use in clinical practice, in order to support ethical reasoning that is required as part of the assessment and decision making process, when caring for individuals who are approaching the end of their lives to maintain appropriate nutrition and hydration and receive maximum benefit from treatment and care.
Ethical Toolkit:
Key messages
“Just as when we come into the world, when we die we are afraid of the unknown. But the fear is something from within us that has nothing to do with reality. Dying is like being born: just a change” – Isabel Allende. The House of the Spirits (2011)
So you’ve come to the end of this resource, and although you will find the content challenging and complex, hopefully it has given you the knowledge to allow you to provide quality end of life care. Remember to be honest with yourself and don’t be afraid to admit if you feel out of your depth. You are only human after all!
You can always get support from a peer or colleague if you need to talk about a certain issue, and refer to the additional materials and research sections in this resource for extra reading.
“Just as when we come into the world, when we die we are afraid of the unknown. But the fear is something from within us that has nothing to do with reality. Dying is like being born: just a change” – Isabel Allende. The House of the Spirits (2011)
Comentários
Enviar um comentário