“Anyone can stop a man’s life; but no one his death; a thousand doors open on to it”
These words were written by Roman writer and statesman Seneca the Younger over two millennia ago. They are as true today as they were then.
The fact that Seneca’s own tragic and untimely passing has inspired numerous works of art over the centuries only adds to the poignancy of his sentiments.
A healthy adult rarely considers his or her death, in part because we have difficulty imagining death and in part because broaching the subject – especially during periods of solitary reflection – can be a depressing experience. Worse still is the feeling of dread that comes from contemplating the death of a loved one.
Nevertheless, as William Shakespeare opined in ‘Henry IV, Part 2’ “we owe God a death”.
Every day, in every part of our world, people are being diagnosed with terminal illnesses or injuries, while families are being told that there’s nothing more that can be done to cure the people they love.
It is reassuring, then, to know that there are people out there who do not flinch from thinking about – or dealing directly with – the process of death.
These are professionals who are motivated by compassion and kindness; dedicated people who specialise in providing any all types of care required by those patients living out their final days.
These people are known as palliative carers and the incredible service provided by them is called palliative care.
The following is a guide to the services offered by palliative and end-of-life carers and facilities such as our own. We hope you find it both useful and informative.
At Burwood Care Home we take pride in our palliative and end of life care, and the process and the outcomes of caring for someone in their last hours and days.
1. What is Palliative Care?
As the name implies, a life-limiting illness is an illness or condition that cannot be cured and that will most likely either cause – or significantly contribute to – a person’s death.
Other terminology used (often interchangeably) with the term ‘life limiting’ includes the terms ‘life threatening’ (meaning that the patient’s life is severely endangered by their condition) and ‘terminal’ (meaning that there is no cure for the condition and that it will likely cause or contribute to the patient’s death).
Other terms you may have encountered include ‘progressive’ or ‘degenerative’ (both meaning that the condition is expected to worsen over time) as well as ‘advanced’ (this means that the illness is in a late stage of severity and that the patient likely does not have long left to live).
Palliative care can take many forms, which are often specific to the requirements of the patient.
A palliative carer’s duties may include helping the patient manage pain, offering spiritual, emotional or psychological support and providing social care (which includes assistance with day-to-day tasks that may have become difficult for the patient).
It also includes improving the patient’s levels of nutrition, health and mobility, as well as working alongside/supporting the patient’s family and friends.
Palliative care may be administered at any time during a person’s illness and does not necessarily require them to be nearing the end of their life.
2. What Areas can Palliative Care Make a Difference?
Palliative care can help the patient in almost too many ways to mention.
In addition to physical aid, pain management and generally improving quality of life, palliative carers can also provide the timely and safe administration of medication and/or treatment, as well as general support with day-to-day activities.
Additionally, palliative carers can also help with organization. If, for example, the patient wishes to host a family get-together, vacation or day trip, a carer can be on-hand to help make it happen. Palliative carers can also help to relieve some of the fatigue and tensions experienced by home caregivers.
Palliative care frequently includes mental health support. Mental health support may involve stress reduction exercises, activities proven to reduce anxiety or insomnia, setting the patient up with counselling or group therapy sessions or occasionally all of the above.
Activities aimed at improving a patient’s mental state could be things like creating art, undertaking light exercise, meditation sessions or psychotherapy.
Palliative carers can also offer their patients a measure of spiritual support, which is not limited to any one specific faith or denomination. People who do not subscribe to any particular religion or belief system may still seek spiritual counselling, which is readily provided by hospital chaplains.
Even financial help is available with palliative care. Social workers can help patients gain access to any funding to which they may be entitled, as well as financial advice, assistance with travel costs and other related services.
3. What are the Six Principles of Palliative Care?
There are 6 guiding principles that permeate all aspects of palliative care, regardless of the area in which the patient is receiving said care.
Palliative care will always:
- Affirm life, while also regarding death as the logical and unavoidable conclusion of life.
- Attempt neither to hasten, nor postpone the patient’s death.
- Provide relief from pain and other distressing symptoms.
- Integrate both the psychological and spiritual aspects of care.
- Create a support system that allows the patient to be as active and comfortable as possible.
- Assist family and friends of the patient in coping with their present challenges and eventual bereavement.
All forms of palliative care follow these principles to a greater or lesser degree
4. What is End-Of-Life Care and How is it Different to Palliative Care?
The duties inherent to palliative care and those of end-of-life care overlap in many key ways, to the point that the terms are sometimes used interchangeably. While understandable (end-of-life care may be seen as the final role of palliative care), this is fundamentally incorrect.
Palliative care aims to improve the quality of life for the patient, supporting them and their network of family and close friends until the end of the patient’s life.
End-of-life care, conversely, is directed towards the patient after they enter the last year (or less) of their life. At this point, the patient’s needs are often quite different. Accordingly, they receive a different level of care.
End-of-life care is often focussed on maintaining as much quality of life as possible, while also attending to legal matters on behalf of the patient.
As with palliative care, a strong emphasis is placed on managing the patient’s physical symptoms as well as offering emotional support both to the patient and his or her family, friends and social support network.
With palliative care, however, the onus is on affirming life and ensuring that the patient gets as much satisfaction from their remaining days as possible. End-of-life care, conversely, deals far more with the inevitability of death, ensuring that the patient is as comfortable and content as their condition allows and with their affairs firmly in order.
So, although similar, these two forms of care are not the same.
5. When Does End-Of-Life Care Begin?
Typically, end-of-life care begins when the patient has entered their last year of life. Estimating how long a patient has left is, of course, an inexact science. Some patients have received end-of-life care for years, while others have received it for only a few days.
A patient receiving palliative care will be updated to end-of-life care at the recommendation of carers and medical professionals.
End-of-life care may occur in hospital, in a hospice or assisted living facility, or even at the patient’s home. The precise location is decided by a combination of the patient’s specific needs and their personal wishes.
6. What Should you Expect From Palliative or End-Of-Life Care?
Both palliative and end-of-life care services are usually tailored to suit the specific needs of the person being cared for.
Things that are considered might include the nature of the patient’s illness or condition and any specific needs arising from that, as well as their personal wishes and the wishes of those people closest to them.
The patient should begin by drafting a personal care plan. This will detail their wants and needs as they near the end of their life. This plan will act as the framework for the care they receive and will be adhered to as strictly as circumstances allow. The care plan may be reviewed and updated by the patient at any time.
The key words here are ‘comfort’ and ‘dignity’. End-of-life carers in particular will make the patient as comfortable as possible as they tend to their final needs and desires.
For example, if a person receiving end-of-life care wishes to enjoy a final meal, they may opt to do so, even if food and fluid are being provided through other means.
7. What are the Main Aims and Duties of End-Of-Life Care?
The aims of both palliative and end-of-life care include keeping pain to a minimum using clinical methods, treating symptoms and improving health (where possible) as well as keeping the patient safe.
It is also especially important for end-of-life carers to work closely with the patient’s family and friends in order to enable a meaningful dialogue between them and the patient.
Of course, the central aim of end-of-life care is to allow the patient to reach the end of their life in relative calmness and comfort.
In addition to these tasks, end-of-life care may include making legal and funerary arrangements on behalf of the patient, working closely with the patient’s family and friends to support them as well as physically caring for the patient and helping them to manage pain and other symptoms of their illness.
Many end-of-life carers will also encourage an interest in creative projects such as writing or art.
End of life carers must also ensure that their patient’s specific cultural, social, psychological and spiritual needs are met and respected.
End-of-life care may involve any number of professionals from various disciplines. It might include social workers, GPs, community nurses and other medical staff, as well as hospital chaplains, counsellors and/or religious figures such as vicars, priests, imams, rabbis or purohits.
End-of-life care encompasses all the above duties (and many more besides), as well as a considerable number of people. A good carer will help to ensure that all of this is handled smoothly and efficiently.
The overall aim is for the process of dying to be as simple and dignified as possible for the patient and his or her loved ones.
8. How Can you Cope Financially?
If a family member has to take time away from work in order to care for a dying relative, this can hit their finances hard. Add the costs of care onto this and it is easy to see why so many families suffer even more than they otherwise would under such a heavy financial burden.
The good news is that there are options available in these types of situations.
Where possible, the caregiver or relative should speak to their GP or a local nurse and ask for referral to a social worker or hospital social worker. These professionals will inform the caregiver of any state benefits they may be entitled to or other financial options they may not have considered or explored.
Sometimes, people go on struggling financially for years without realising that they actually qualify for help from various sources.
If help from the state is not an option, it is also possible to seek help from various charitable organisations, many of which will provide aid for free. Some charities will also award grants to certain patients at certain times. A local hospice is probably the most direct way to seek such assistance.
Visiting the Citizens’ Advice Bureau can also be helpful in some cases.
Another arena for raising money is the Internet. We are more connected than ever in today’s world and websites such as Go Fund Me or Just Giving can allow people to reach out to millions of potential donations.
Fundraising activities such as bake sales, sponsored walks and the like can also serve to boost the profile of the fundraising effort. If the patient is well known and liked in their local community, it may also be worth reaching out to local news outlets in order to increase awareness of the situation. This may seem outlandish, but a lot of people have raised money for medical care in this fashion.
Finances can be a major difficulty during times such as those described, but there are accessible options for many people and help can be made available for even the most desperate of situations.
9. How can you Comfort a Dying Person?
One of the most important ways to comfort a person who is dying is to create a gentle, soothing atmosphere. Low lighting can be important, as the dying are often sensitive to bright light. Avoid loud, intrusive noises as much as possible and, unless the patient specifies otherwise, keep any music gentle and calming. Essentially, anything that fosters tranquillity and peacefulness is good.
It is also of great help to the patient that their mouth be regularly moistened. The human body tends to dehydrate as it dies, which can cause significant discomfort to the patient. Use wet sponge sticks to keep the patient’s mouth moist. This simple act will greatly increase the patient’s comfort levels during their final days.
If you need to disturb a dying person for whatever reason, even for something straightforward such as moving them slightly or fluffing pillows, be sure to touch them gently first.
After this, let them know verbally what you intend to do. People in pain are sometimes easily startled. When you speak, do so slowly and with a soft, patient tone.
Above all, it is recommended that the caregiver create a quiet, supportive and loving environment for the patient. The specifics will, of course, vary from patient to patient, but these guidelines should be useful for the majority of cases.
Physician Dr. Karen Wyatt considers the final moments of a person’s life to be a powerfully life-affirming experience. She writes
“These moments spent with a loved one during the last few hours of life are precious and profound and they can change you for the good forever. Say yes and show up to offer comfort when this opportunity occurs in your own life. You won’t regret it”.
10. Making the Decision to Withdraw Treatment
Life sustaining treatments, such as nutritional support (usually delivered via feeding tube), dialysis and ventilators may be withdrawn if it becomes clear that there is no chance of recovery and especially if said treatments are simply prolonging the patient’s death or continuing their suffering with no hope of reprieve.
The decision to withdraw treatment can be an emotionally loaded one. In the event that the patient is lucid and able to communicate, their healthcare team will discuss the decision with them. If the patient has developed a care plan or submitted an advanced decision to his or her caregivers, then this is the plan that will be followed.
If the patient is unable to discuss options and has not submitted specific instructions, then the decision will fall to the patient’s closest relatives.
If the decision to withdraw treatment is made, the care team will work to minimize pain and distress, allowing the patient to die peacefully.
In the event that an agreement cannot be reached between all concerned parties, the case may be referred to the Court of Protection for further consideration.
11. What Does a Dying Person Want to Hear?
It can be difficult to know what to say to a dying person. Sometimes it is better to say nothing at all.
It is not uncommon for dying people to spend significant periods of time in deep reflection, as they relive old times, let go of past grudges and deal with outstanding issues. Often, it really helps if the caregiver simply sits with the patient and offers silent support, being present if the patient should wish to discuss something out loud.
When it comes to conversation, soft, soothing tones are best. Speak clearly and regularly reaffirm positive statements about the person and their life. Be sure to convey, either directly or indirectly, that although they are loved and respected and will be greatly missed, the patient may let go of life at any time they feel ready.
It is vital that the patient does not experience guilt for ‘abandoning’ or ‘letting down’ their family, friends and colleagues by dying. This can be affirmed through gentle conversation.
When conversing with the dying, it is best to use words sparingly, as the patient may need to contemplate, sleep or may experience bouts of pain as the end nears.
Be sure not to put off any necessary discussions regarding the patient’s funerary requests or legal affairs, however. These things are important, but many people (especially those still grappling with the reality of their situation) may try to avoid such discussions.
In such cases, a general rule would be to follow the dying person’s lead. Let them dictate both the topics discussed and the pace of the discussion. Be patient and understanding at all times.
Some people can be blunt to the point of insensitive when discussing their own death, which can be off-putting to their loved ones. It is important to note in such instances that everybody deals with difficult situations differently. Some people prefer to deflect the gravity of their situation by using humour, or focussing their attention on seemingly insignificant things. Others may avoid the subject of death entirely, preferring not to think about it at all.
In these cases, it is advisable to listen for verbal clues suggesting that the person is ready to talk about dying (“I’m so tired of feeling this way” or “I just want it to be over” for example). When you hear statements like these, gently push the discussion further with a few questions. Above all, be open and receptive to whatever they have to say.
Ask the person what you can do to help them. If they don’t have a ready answer, suggest things that you are able to do for them. This can help enormously.
If you feel bad about something that occurred between you and the dying person in the past, you may ask the dying person for forgiveness. Don’t feel bad about bringing it up, as they may be thinking about it as well and could be relieved to grant you final closure. In return, the person may even ask for your forgiveness. If this happens, be sure to grant it and help to free them from any internal conflict that will make the process of dying more emotionally difficult than it can already be.
You may also wish to thank the dying person for anything they have done for you, or in general. It helps a dying person in a big way to know that they have been appreciated in life and that their actions have yielded positive results. It also helps to show people how you really feel. Tell the person how much you respect, love and admire them. Tell them often.
Above all, the most important thing to do is be there for the dying person. It is absolutely vital that they do not feel alone or more vulnerable than is necessary.
Calming phrases such as “It’s OK. I’m here with you” and “you’re not alone” or even “I love you” will empower the person to feel supported and able to let go when the time finally comes.
In ‘Macbeth’, Shakespeare writes, “nothing in life became him like the leaving it”. It is a simple line afloat in an ocean of meaning and pathos. Each life touches so many others and those other lives in turn touch still more. It is a process that has continued – and continues unabated – for the entirety of human history.
Indeed, the interactions we experience and the lessons we learn from them and impart to others are nothing less than the raw materials from which both history and the human experience itself are woven. Death is only the end of a person’s life, it is not the extent of that person’s influence, nor is it the finality of their experience. People live on in the lessons they teach us. Who they were shapes who we are – and, by quite the same token, who we are will reach further than we could ever conceive.
If you are experiencing any of the circumstances described in this feature, please know that we empathise and that our excellent staff are standing by, ready to help in any way we can.