End of life care through the eyes of a doctor and a patient

Categories: In The Media.

I was horrified to read the recent articles ‘Care? No, this is a pathway to killing people that doctors deem worthless’ and ‘3000 doctors putting patients on death lists that single them out to be allowed to die’ published in the Daily Mail. As a Specialist Registrar training in Elderly Medicine and a terminally ill cancer patient myself I have strong views on these issues both personally and professionally.

The Liverpool Care Pathway (LCP) is accused of being a ‘backdoor form of euthanasia’ and that we as doctors using it are deliberately hastening our patient’s deaths for sinister motives. In reality the LCP is simply a document we use when we feel a patient has entered the very final stages of life in terms of hours or days. It prompts us to have open discussions with relatives and if possible patients, to stop unnecessary medication, to discontinue futile medical interventions and to shift our focus of care to symptom control, comfort and dignity.

We are also accused of heavily sedating patients at the end of life. This is not the case. We use small doses of medicines such as morphine or midazolam to help relieve distressing symptoms such as pain, breathlessness or agitation. Studies of the use of medication prescribed to patients on the LCP have found that very conservative doses are used and patients are certainly not ‘heavily sedated’. My intention when prescribing at the end of life is wholly to relieve suffering and definitely not to hasten death.

Most patients on the LCP in my experience are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’ as suggested in the first article. Sometimes we continue fluids subcutaneously if there are concerns about a patient suffering from thirst or if the family has very strong views on withdrawing artificial hydration. The problem with continuing intravenous fluids in these patients is that it involves inserting intravenous cannulae in order to administer them. This is painful, often very difficult and sometimes near impossible in patients that have been in hospital for a number of weeks. I know that when I reach the very final days of my life I certainly do not want to have multiple cannulation attempts and would much prefer that someone offered me good mouth-care to keep my lips and tongue moist.

The LCP is not a one-way road to death. In fact one in ten patients initially cared for on the pathway come off it because they improve clinically. We as doctors cannot accurately predict the future in all cases and much of what we do in Palliative Care is based on clinical experience and not hard science. Patients surprise us all the time and the key to providing good care in this setting is regular review and keeping an open mind whilst trying to communicate these uncertainties to the patient’s loved ones along the way.

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier.

I’d also like to elaborate on the ‘death lists’ GPs have been accused of keeping again for sinister motives. These are more properly known as End of Life registers or in my area, the Gold Standards Framework (GSF). The idea is that for frail patients with multiple health problems or for people like me with life-limiting conditions GPs ask themselves the ‘golden’ question – ‘Would I be surprised if this patient dies in the next year?’ If the answer is no then they are entered on to the register and this sparks a cascade of service provision, discussions and care. For example, Advance Care Planning may be tackled so that patients can make their wishes known when preparing for the end of life. This includes very important decisions such as determining preferred place of care for death. The vast majority of people when asked where they’d like to die will say home but in reality most people die in hospital at present.

The GSF is essential, if GPs do not identify those patients requiring Palliative Care input how on earth can they focus care and services on the most needy? My name appears on the GSF and I am extremely comfortable with this. Although I am well, working and living a full, productive life at present there will come a time in the relatively near future when I am less well and I want this time to be properly planned for to enable me to achieve my end of life wishes. I fully believe the fact that I am flagged up as a patient who will need Palliative Care services will help me to die in the manner I want to. Therefore in my view End of Life registers are not about being ‘singled out to be allowed to die’ but more about allowing people at the end of their lives to die in the way they wish to.

Whenever end of life issues are discussed resuscitation always comes up as an emotive topic. I have witnessed numerous resuscitation attempts in a professional capacity and because of this experience from the earliest days of my illness I made my wishes clearly known that I did not want to have cardiopulmonary resuscitation in the event of me suffering a cardiac arrest.

The reality of resuscitation is that it is a brutal, undignified way to die with only a tiny percentage of patients surviving it and an even tinier proportion of these patients leaving hospital alive. Even when it does succeed in restarting someone’s heartbeat it does not take away their cancer or other underlying chronic disease. The panic and chaos surrounding a bed where a resuscitation attempt is happening is horrendous. Ribs are broken regularly during chest compressions and it can be difficult to obtain venous access to give drugs such as adrenaline so often patients are stabbed multiple times with needles.

The problem as I see it is that perhaps as a profession we do not communicate with patients and their relatives about this topic well enough. I personally think it should be routinely discussed as part of our clinical management plans. In my experience most older people do not want resuscitation and are quite happy to talk about it. Resuscitation is a treatment and we as doctors are not obliged to provide treatments that we feel are futile. However, the way we communicate this sensitively so that our rationale can be understood is of key importance.

One thing in life is certain; we are all going to die. We need to talk openly about it and plan for it properly. Tools such as the LCP and GSF help doctors to work with their patients to achieve this. It is a scary thought but accepting that not all illnesses can be cured, challenging both the societal taboo about dying and the expectation for eternal youth and health will mean many more people can achieve a ‘good death’ and in turn those left behind can grieve knowing their loved one had a comfortable and dignified end.

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