An excellent guest blog on the importance of sensitive and trusting nursing from US-based Melanie Bowen.

Chronic illness can be very difficult to endure for patients and their families. During times of greatest need, sufferers of life-threatening diseases require all the support they can get from healthcare providers, family and friends.
Since patients will spend most of their time accompanied by a nurse in a medical facility or in-home nurse while at home, the strength of the bond that forms between the two could be the key factor in determining recovery rate and potential.
Even if recovery is impossible, good support can bring calmness, acceptance, and closure to the afflicted.

Why is emotional support so crucial to the recovery of patients?

As human beings, we are emotional beings. Our fondness for one another is based on a combination of similarity, frequency of interaction, sentimental behaviour, and emotional and intimate connections. The more ‘proof’ that a person receives from another individual to show that they care, the more attached he or she becomes to the supporter.
Humans need to have confirmation and assurance of their relationships with others to feel secure. Without actions, words mean nothing.
Nurses who show genuine desire to help and befriend patients are the ones that do their jobs the best.

How can a strong relationship between nurse and patient affect recovery?

From liver failure and brain tumours to pleural mesothelioma and malignant melanoma, a close bond between caregiver and patient can speed up recovery time and improve the chances of survival regardless of how grim the circumstances.
First, a positive and honest relationship between a nurse and patient gives the patient happiness. Knowing that somebody trustworthy is always there to look out for them can be a very comforting thought that reduces massive amounts of stress and anxiety.
Fear of death cannot be avoided, but strong physical and emotional support can brush aside many of those constant worry that add to stress and anquish.
Additionally, many chronic patients do not have any family or friends to visit them during times when they need the most love. Caring nurses can replace those missing loved ones to provide the same important emotional support that helps the afflicted fight on despite the overwhelming odds.
Second, caring nurses have intimate knowledge of their patients. This is a huge advantage when providing medical assistance that lessens the strain and pain.
Take the example of 26-year-old breast cancer patient Theresa, whose nurse, Jessica, was her caregiver and also became her best friend. Having been by Theresa’s side for many years, Jessica knew Theresa’s medical history. She gave Theresa candy before the drugs that always initiated her gag reflex, to use a longer needle on her, and to check her bowels if a physician doesn’t request an enzyme test.
By contrast, patients who have to transition frequently between nurses don’t have the beneficial personal connection. New nurses aren’t familiar with how the patient has things done, and they don’t have the personal bond to make them care for the patient like a true friend.
Lack of knowledge about and lack genuine concern for a patient are two things that could hinder recovery progress and contribute to worsening health.
Finally, a significant personal bond between nurse and patient give nurses more reason to give their all in providing for the sick. After spending so much time together, the patient is no longer just a stranger but a good friend. As a true friend, a nurse will have personal reasons along with a career obligation to provide the best care possible.

A survey on people’s end of life wishes carried out by the California Health Care Foundation in late 2011 came up with the following findings:

67%: Making sure family is not burdened financially by my care;
66%: Being comfortable and without pain;
61%: Being at peace spiritually;
60%: Making sure family is not burdened by tough decisions about my care;
60%: Having loved ones around me;
58%: Being able to pay for the care I need;
57%: Making sure my wishes for medical care are followed;
55%: Not feeling alone;
44%: Having doctors and nurses who will respect my cultural beliefs and values;
36%: Living as long as possible;
33%: Being at home;
32%: Having a close relationship with my doctor.

The Foundation, in summarising the findings, says that there’s “a disconnect between what Californians want (a natural death at home) and reality.” The various poll answers, available in the pdf, prove this conclusively.

What’s true for Californians is true for older people in this country too, and in most developed nations facing the same issues of increasing numbers of old people, the taboo around discussing dying and death, and medical advances which make prolonging life in hospital more likely than a natural death at home.

So, how to make the end of life experience less a ‘disconnect’ with what people want and more a positive, comfortable and comforting experience?

Well, encouraging ailing older people and the terminally ill to have a personal death plan would be a great step forward. It would enable the patient, their loved ones, their medical professionals and, if appropriate, their ministers of faith, to discuss openly and honestly the end of life experience the patient wants, and if at all possible, deliver these wishes.

We have created a holistic death plan that covers the medical, physical, emotional, spiritual and practical issues, even down to who looks after the pets. Less prosaic are considerations such as the aromas the patient wants to smell, music to hear, people to be present, where the patient wants to end their life and, of course, the level of medical intervention.

If the adoption of death plans became widespread, far more people would have the end of life experience they, and their loved ones, want.

To make it easy, there’s a simple to complete template in the Lifebox section of My Last Song. Once filled in, in can be securely stored, updated and accessed by selected loved ones.

The more people who have their death plans, the more seriously they will be taken by the medical profession.

The review into Palliative Care, led by the chief executive of Marie Curie Cancer Care, Thomas Hughes-Hallett, has highlighted the fact that very many dying people don’t have the end of life experience they want.

Instead of a ‘good death’ with their loved ones by them, their emotional, physical and spiritual needs being met, they will be taken to a hospital where, quite often, a lonely, frightening and upsetting death awaits them.

My Last Song has produced an innovative and holistic ‘Death Plan’ template to encourage discussion about a person’s last days so that they have a ‘good death’.  The areas covered in the plan include medical treatment, physical comfort, emotional and spiritual needs and ways in which stress and fear can be reduced.

The questions are designed to involve the patient’s doctor, close family and friends and even professional advisers so that the person whose life is ending has no concerns about issues, such as their will or who looks after their pets, as the plan enables these topics to be addressed.

At the very least, death plans such as this enable death and dying to be talked about in an calm, unemotional and rational way. All too often talk of death is put off as it is too upsetting or awkward until it is too late.

At best, it means that the patient and loved ones are in control of the end of life experience, and the death is as comfortable, comforting and reassuring as possible.

The My Last Song death plan is easy to fill out, it can be edited at any time and stored securely in the Lifebox, along with all the other end of life information such as funeral wishes that close family members and the executor will need.

AND stands for Allow Natural Death, and it’s a phrase that American researchers believe will catch on more than the current phrase, Do Not Resuscitate.

The issue about end of life medical treatment is as topical in the US as it is in this country.

In both societies, neither ailing older people nor their younger family members are comfortable talking about death. It’s therefore surrounded by fear of the unknown, and as nobody likes to talk of what they are afraid about, so the taboo about addressing death continues.

Usually late in the patient’s life, he or she will say that ‘I don’t want to be hooked up to lots of machines,’ or ‘I want it to happen quickly.’

How this view is communicated to the health professionals providing end of life treatment is again the subject of confusion and reluctance to address the issue. The patient’s life is therefore often unnecessarily prolonged, the family’s anguish stretches out and the medical staff are not certain how to proceed.

A simple form of words can change this, and the acronym AND is really very simple.

Research in the States has shown that the phrase Do Not Resuscitate is not used by many families because it is a negative and sounds scary, whereas Allow Natural Death (AND) connotes a positive, it implies permission.

It also gains plus points because it uses the word Natural, as in Natural Childbirth and Natural foods.

What starts in the US quickly cross the ‘pond’, and because part of My Last Song’s mission is to encourage people to address their later life decisions before it’s too late, we think AND should be adopted in the UK.

It will give impetus to the Dying Matters coalition’s goal of changing attitudes towards death, dying and bereavement and make it more likely that the patient, the patient’s family and the family GP will discuss the chosen end of life treatment.

My Last Song has created a Death Plan template, within the Lifebox, which makes it easier for people to make the decisions that will result in a ‘good death’. The old and terminally ill will be more in control of the end of life experience they want.

It will encourage families and GPs to talk about death and to plan for it thus reducing the fear of the unknown.

We only die once and, if possible, it should be the experience we want it to be.

Following the British Medical Journal’s website discussion about death and dying, Dr Chris Browne who edits the health and fitness section of My Last Song, has put out a statement saying that doctors treating the very old or terminally ill should encourage them to write their own personal death plans.

“The reluctance of patients and their families to discuss death as the likely outcome of an illness or because of old age makes their end of life medical management more difficult.

“If by filling in a death plan the patient, the family and the appropriate health professionals have a more meaningful discussion, the result is likely to be a more positive approach with obvious benefits for the patient, their loved ones and the medical staff treating them.

“By having a personal death plan, the patient and the family will be more reassured that the time leading up to the final moments will be as comfortable and comforting as possible.

“As a GP I believe that death plans should be encouraged as a way of changing attitudes towards death and dying.”

Within the Lifebox section of My Last Song is a death plan templatewhich allows people to state:

• how much they want to be told about their condition,
• where they want to die,
• the level of medical intervention they want,
• who they want to be responsible for their end of life treatment,
• who they want to visit them when they are dying,
• who should be there when they die,
• what they want to hear, (music, poetry, drama, prayers…),
• what they want to smell (incense, scented candles, oils, flowers…),
• how they want to be touched (hand held, caressed, gentle massage…),
• issues to be cleared up so they have no worries at the end (knowing their loved ones, pets are cared for, their estate is in order, their will is up to date…).

Too many people still die a lonely, impersonal and frightening death which reinforces society’s reluctance to discuss the subject. We only die once so it should be, if possible, the experience we want it to be. Personalised death plans will make that more likely.

Thankfully there is now a concerted move to reduce the taboo surrounding death. The Dying Matters Coalition, of which My Last Song is a member, is spearheading this change of attitude towards dying, death and bereavement.

On 1 July, the General Medical Council published Treatment and Care Towards the End of Life, recommending that death should become an explicit discussion point when patients are likely to die within 12 months.

Then in September, the BMJ’s website published a piece called We’re All Going to Die. Deal with it which highlighted the need for candid discussion about palliative care and end of life medical treatment.

My Last Song supports visitors to address all their end of life issues, put their legal and financial affairs in order, organise their care options and plan their own funerals.

This information can be stored in a secure online Lifebox. Only the Lifebox owners can store and edit the information until they give permission to a close family member to open it, normally towards the end of their lives or on their death.

Common sentiments expressed a few weeks after someone has died are: ‘I wish I had known…I would have gone to the funeral,’ or ‘If I had known I would have sent my condolences to the family.’

As I point out in an article in My Last Song, some people are understandably hurt and upset that they were not told, thinking they were not important to the person who died or to his or her family.

For others, it intensifies the grief as they were not included in the ceremony or service that said farewell to someone close to them.

This is why you should list those you want to be told of your death or final illness in the ‘Tell These People’ box in the My Details section of your Lifebox. It will enable the person(s) who you allow to open your Lifebox to inform these people quickly and easily.

Of course, your family will know most of the people that were close to you, but it is often the case that when facing the shock of the death, they don’t always think clearly or act straight away and then things – or in this case people – get forgotten.

The Lifebox includes a section called Death Plan which enables you to plan the ending you want. This has a box in which you can name those people you want to be told that you are terminally ill.

You can also create a public profile part of your Lifebox which includes an area called Messages on which your friends and loved ones can put memorial messages when you have departed which others can see.

It is a strange fact that lots of people who, when alive, give regularly to charity, don’t leave money to charity in their wills.  I find it strange because the money you leave to charity will continue to assist the good cause you thought was worthy of support when you were alive.

For some people, leaving money to charity might solve the problems of deciding who is going to benefit from your legacy…if the money goes to a good cause, then family squabbles are less likely to break out.

Legacy giving is an important source of funds for many charities. Indeed most large charities have legacy marketing managers to maximise their legacy income.

This, of course, handicaps smaller charities, those dealing with local issues or supporting  ‘unpopular’ disadvantaged groups such as asylum seekers, drug abusers and ex-offenders.

In an article on My Last Song, I encourage people to leave money to charities, and to make an informed decision on the most appropriate charity. It also suggests that people look at ways of maximising their financial assistance. An example is the Freemasons’ Grand Charity which will match the funding to approved charities raised at local level.

I also suggest that people use their funerals (or those of loved ones) as a way of raising donations to charities, the local hospice or friends of the local hospital.

You can also use the wake, or a life celebration party a few weeks after the death, to raise funds by having an entry price, and a raffle which could include raffling some of the possessions of the person whose life is being celebrated.

Some people, diagnosed with a terminal illness, have such a party before they die, and use this to raise funds – normally for cancer research or for the organisation that is helping those suffering from the terminal illness.

Our death is inevitable, but it shouldn’t be ignored. Planned properly, it can be a positive event which can be used to help others after we have left this life, and raising funds for charity is a very good example.