Tag Archives: human

The human touch

I recently took a group of medical students to see Mrs Cole*. She was 88 and was in hospital due to a severe exacerbation of COPD. She was kind enough to let us talk to her and listen to her lungs, despite being quite breathless. As we talked I perched on the edge of the bed and, as I often do, held her hand.  She grasped it tightly and wouldn’t let go. I finished the teaching session, sent the students off to their lecture, and stayed with Mrs Cole longer than I had intended. It felt like she was clinging to me as we talked; clinging to my youth, my health, and my carefree existence.

I couldn’t offer her much: we were treating her exacerbation but no drugs could reverse her lung damage. No words could allay her very real fears for the future. But I felt what I could offer – a tiny piece of my time, and my hand to hold – meant something.

As my friends will attest I am no alternative medicine advocate, but it would be arrogant to suggest that there is nothing beyond the knowledge of ‘modern medicine.’ Thinking about Mrs Cole’s reaction I wondered if we underestimate the power of the human touch: the literal, physical connection of one person’s skin on another’s. Hospitals are dehumanising places and as doctors we put up barriers to protect ourselves from the daily site of pain, disease, and suffering. We are in danger of slipping  into an ‘us and them’ mentality, compounded by the differences in socioeconomic status and educational experiences of the average doctor and average patient. We examine and investigate people in a clinical and efficient way and try to fix them. But many patients we see, especially in general medicine, cannot be ‘fixed.’ They have chronic diseases that they will live with for many years. In all honesty, more often than I’d like to admit our treatments do very little to alter disease trajectories. I sometimes think a dose of compassion is a more effective intervention than any drug. The question examined in Intelligent Kindness, is whether NHS staff, in the current climate, have any compassion left after experiencing little themselves.

Despite the challenges, I see hope in the relationships we form in healthcare settings. The system around us shouts about targets, procedure times, and new-to-follow-up-ratios. It demands quality, without articulating what that is. But in the midst of this we find quiet moments of human connection, where people let their barriers down, hold hands and share an understanding of a shared human experience. ‘Us and them’ becomes ‘us’.

Kindness is something that is generated by an intellectual and emotional understanding that self-interest and the interests of others are bound together, and acting upon that understanding

A literature search on the effects of human touch disappointingly reveals little. A review article in The Journal of Holistic Nursing explores a conceptual model of intentional touch and highlights some relevant studies. It uses the term ‘touch hungry‘ to describe those individuals who are seldom or inadequately touched in a safe or appropriate way. They are often marginalised individuals: due to poverty, homelessness, age or disability. They may be separated from family and friends, or segregated from society because of stigma and fear. Healthcare professionals will be familiar with these groups and their complex needs. Some nursing practices, which can be as simple as providing hand and foot care, encourage the use of intentional therapeutic touch to offer comfort and promote healing as part of holistic nursing practice.

An interventional study by Moon & Cho, 2001, explored the effects of nurses providing handholding for patients undergoing cataract surgery. The study authors suggested that comfort touch conveyed empathy, had a soothing effect, reduced anxiety (as measured by patients subjective experience and by adrenaline levels), and provided both the nurse and the patient with a feeling of increased security. The authors encourage touch as an intervention because “it is a noninvasive, harmless, inexpensive, and easy to perform and because the patients’ responses to the intervention were very positive“.

Edvardsson et al. (2003) discusses the importance of intentional touch for the professional, in the context of caring for older people. The authors suggest that when nurses provide intentional touch to patients they perceive themselves as valuable as people and professionals, and feel a power inherent in the kind of touch that eases suffering. In addition, the experience of intentional touch has the potential to transform the way in which the nurse regards his or her patients. Rather than seeing a demanding patient, Edvardsson suggests that the use of intentional touch helps the nurse see the patient as a human being.

These descriptions are interesting, but they are limited by subjectivity and reporter bias. In a search for more concrete evidence of the therapeutic benefits of touch I came across a review ‘The skin as a social organ in Experimental Brain Research, which “situates cutaneous perception within a social neuroscience framework by discussing evidence for considering touch…as a channel for social information.” The authors present data which they suggest indicates that specialised pathways for socially and affectively relevant touch may begin at the level of the skin with specialised nerve fibres. They also explore evidence for  higher processing of social touch sensation in specific brain areas such as the insula and orbitofrontal cortex. Of course such reductionist approaches have their own limitations when we examine such a complex phenomenon as the physiological, emotional and social effects of human touch.

Abraham Verghese, an Infectious Diseases physician articulates the power of touch specific to the doctor-patient interaction in his TED talk on the ritual of the physical examination. In this context the examination’s function is not to detect signs of disease, but to communicate compassionate and, he argues, this has a transformative effect. The ritual is cathartic and comforting and allows the  doctor to communicate a message to the patient: “I will always be there. I will see you through this. I will never abandon you. I will be with you through the end.”

I’m not sure where these thoughts should lead. I certainly wouldn’t advocate for NHS-funded touch therapy in place of other more evidence-based approaches, and clearly such an intervention could never be implemented on a large scale since the care-givers would need to truly feel the compassion they were trying to convey. But compassion, empathy and the human touch are central to holistic care, and it is worth reminding ourselves of their value. It comforts me that other physicians understand the power of this dimension of care, despite the difficulties in generating empirical evidence of its effects. Human touch can communicate in ways that go beyond the limitations of language, and articulate kindness more powerfully than any other action.

As GP Dr Jonathan Tomlinson says “Kindness in healthcare is how we communicate with and relate to our patients, our colleagues and ourselves. It is much more than how we listen, it is how we feel and how we respond and it is part of the culture we share.

I hope that should I ever cross the divide from physician to patient, that someone will communicate their compassion through more than words; that they will take time to listen, to understand, and to hold my hand.

* name changed to maintain confidentiality

Do you have a right to die?

I like to think that I am in control of my life and get very frustrated when this control is taken away, even in trivial ways: when train delays make me late, when I am waiting for an interview panel to decide whether to employ me or when a relationship ends and I am on the receiving end of the “it’s not you, it’s me” speech. I often wonder how I would react to something more serious and substantial being taken out of my control. Something such as my health, my independence or my autonomy.

Autonomy and rights are a common focus of discussion, especially as we have moved from a paternalistic to a partnership model between the doctor and patient. Such issues have become central to the debate surrounding physician-assisted suicide and assisted dying. Do we have a right to choose the timing and manner of something so fundamental as our own death? To what degree do the wishes of an individual have to come second to the perceived adverse effects on society?

Debbie Purdy, who suffers from primary progressive MS, and fought for a clarification of the law should her partner assist in her suicide. She continues to campaign for a change in the law

In a landmark, and now famous, case heard by the Law Lords in 2009, Debbie Purdy contested that the 1961 Suicide Act constituted an interference with her rights, within the context of her private life, under article 8(1) of the European Convention on Human Rights. She argued that she had a right to decide to kill herself, that this was part of her private life, and that this right was infringed upon by the 1961 Suicide Act. The Lords ruled in her favour. This did not, however, change the law; encouraging or assisting suicide still carries a sentence of up to 14years imprisonment.  As a result of this ruling the Director of Public Prosecutions (DPP) was forced to issue new (interim) guidance on who should be prosecuted. This guidance concentrated not on the health of the victim as may have been expected, but on the motivations of the suspect – for example, clear evidence of compassion mitigates against prosecution. So we now have a situation in which current law acknowledges that a person has a right to a private life, and that this extends to the decision to end their life, but that assisting another person to do this is illegal. However, if assisted suicide is thought to have taken place but to have been done for compassionate reasons and not for personal gain a prosecution is unlikely to be pursued (none of the 31 cases brought to the attention of the DPP since Feb 2010 have been prosecuted).

Some have argued that this situation is appropriate and that current law has “a stern face but a kind heart.” They argue it maintains a necessary hard line against any attempt to end a life, but allows for understanding and individual circumstances to be taken into account when rulings take place. However, those who have had experience of this process do not feel it is fit for purpose. It leaves relatives, friends and doctors with the threat of criminality hanging over them as they struggle to make difficult decisions, with compassion and dignity. One of the necessary factors for not prosecuting is that the person assisting in the suicide does not benefit from the death, but it does not define what would constitute a benefit. As Debbie Purdy points out, if her husband inherits half of their house has he benefited from her death? It also perpetuates an inequality that those who are physically able can end their own lives, either themselves or by travelling to Dignitas, but those who have progressive diseases that leave them physically disabled cannot. They may decide to take their own lives earlier than they would wish to “before it’s too late”. Furthermore we have, as a society, accepted assisted suicide and do not stop those who wish to do so travelling to Dignitas in Switzerland. It is indefensible to export our moral dilemma abroad.

When we talk about the morality of assisted dying or euthanasia we often consider the difference between acts (eg injecting a lethal dose of drug) and omissions (eg removing a patient from a ventilator and “letting them die”). There are those that see these as morally distinct but Shaw, amongst others, argues that despite the fact that legally the two cases would be treated very differently (possibly a charge of murder in the first case) there is no moral distinction. He goes further and considers how we define death and its implications. “If we agree that brain death is the end of a person, we should adopt brain life as the central aspect of personhood in terminal patients and accept that the body is merely another type of life support.” If this is the case, then “turning off” that life support via the mechanism of active assisted suicide would be ethically permissable. Such examples and comparisons are helpful in highlighting the inconsistencies in our initial “gut feelings.”

Throughout all of these difficult debates we must be very clear as to our definitions. The call for a change in the law relates to “assisted dying” which specifically applies to ending the lives of those with terminal disease. This is different from “assisted suicide” which includes those who are not thought likely to die within the next 12months but who may have other reasons for wishing to end their life.  There are some, such as Jacob M Appel (a bioethicist) who believe that all competent adults have a right to end their own lives, and that the right to die is a useful test of the overall freedom of a society. There are not many who share his view and this is not what is being proposed. Importantly the current proposals for a change in favour of assisted dying would not help Tony Nicklinson, who is currently fighting a legal battle for his right to die. After suffering a massive stroke he is paralysed below the neck and can communicate only by blinking or through limited head movement. He has, on numerous occasions argued that his existence is undignified, intolerable and that he is in constant suffering. This is not the view of every paralysed patient but this is not the point: the only person who can decide on whether they have quality of life is the individual. Tony Nicklinson successfully articulates his wish for autonomy:

Tony Nicklinson who wants to be assisted to die and is awaiting a High Court hearing of his case.

“By all means protect the vulnerable; by vulnerable I mean those who cannot make decisions for themselves. Just don’t include me. I am not vulnerable. I don’t need help or protection from death or those who would help me.”

The judge was absolutely right when he said the underlying issues in the case “raise questions that have great social, ethical and religious significance and they are questions on which widely differing beliefs and views are held, often strongly”. Care not Killing and Dignity in Dying are just two campaign organisations on opposing sides of the debate. Tony Nicklinson is now seeking a declaration by the High Court that “it would not be unlawful on the grounds of necessity for Mr Nicklinson’s GP, or another doctor, to terminate or assist the termination of Nicklinson’s life”.

The Commission on Assisted Dying, which published its report earlier this year, took into consideration many valid fears including a slippery slope effect widening an initially narrow scope of the terminally ill to other patient groups; concern that the vulnerable would be coerced into decisions they would not otherwise choose; objections by doctors, who had concerns about a change in the doctor-patient relationship, or who would not want to be part of the process on moral or religious grounds; and wider concerns about what is deemed to be a good quality of life and who decides, including concerns from Disability Rights groups. The Commission’s chair Lord Falconer feels that a workable solution has been found and that it is time for a change in the law.  Stringent safeguards, regulations, and monitoring have been proposed that should stop us using fear as an excuse to move forward with the debate.

Personally, my views on these issues have changed over time. I hope to remain in control of my own destiny, to the extent that this is possible, until the day I die. I certainly do not want others placing a value on my life and determining whether it has an appropriate level of quality. These are things only I can decide.  As a physician I am a passionate believer in the value of high quality palliative care, and its ability to give people a “good death”. But I also believe that there are a group of people for whom no amount of drugs or counselling will alleviate their suffering, and who want a compassionate alternative to a life they feel is unbearable.

Putting personal views aside, there is an urgent need for greater public engagement with these difficult issues. The voices of those wishing to end their lives grow louder and more numerous. There must be open and honest public debate, scrutiny of the findings of commissions, and legislation in accord with the realities of living and dying in the twentieth century. Science and society have moved on; our ethics and laws must catch up. The medical profession needs it, patients deserve it, and the public  demands it.

Last week a man asked me to kill him

I had just told Mr George* that his end-stage heart failure had become refractory to treatment, and I thought it likely he would not survive this hospital admission. He looked at me carefully and said, “Well that’s it then. Can’t you just give me something…end it for me?”

This is not the first time a patient has asked me such a question, and will not be the last. Often the question is more ambiguous, and it is unclear exactly what they are asking for: “can you just put me to sleep?” could be interpreted as a plea to end their life, but could equally be a request for a break from their symptoms or thoughts, with the hope of a more energised remaining time afterwards. It is a constant challenge to interpret such questions appropriately and personalise support and treatment for the needs of the individual.

In this case I did not hesitate in giving the only answer I could. Both the law and the GMC’s guidance are very clear that both euthanasia and assisted suicide are illegal. However, I always feel uncomfortable with the knowledge that I am powerless to alleviate suffering that is not physical. People who are dying have complex emotional and existential needs that a shot of morphine is not going to touch. What often strikes me about patients like Mr George is that the thought that they are dying still seems to be a surprise for which they are unprepared. I wondered whether he had talked about his thoughts and wishes for his death before now, and whether the many healthcare professionals he must have encountered in the year up to this admission had ever broached the subject with him.

Death is an inevitable part of life but as a society we seem unwilling to acknowledge this. As doctors we are as guilty as anyone; complicit in the idea that advances in modern medicine have the potential to cure all. The medicalisation of death and dying have hidden it away behind sanitised white doors; no longer is it commonplace to see a grandparent die at home surrounded by family, as it once was. The secularisation of society has also contributed to a disconnect between life as we experience it day to day, and a bigger concept of time, place and meaning.

As doctors we need to talk about death with our patients and give them the space to express their beliefs and wishes. As individuals we need to talk about death with our friends, partners and families and break the societal taboo. Some believe a “good death” is an oxymoron, but I disagree. For my own death I hope for comfort, dignity and a fulfilling life before it inevitably comes to take me. Life matters. Dying matters.

*names changed to maintain confidentiality