The privilege of caring for my dying patients

Dr Dominic Whitehouse

Palliative care consultant Dr Dominic Whitehouse tells SPUC about working in a hospice, why assisted suicide is dangerous and why he would be devastated if there was a change in the law.

Why did you decide to become a palliative care doctor?

Well, it is quite complicated really.  I came to it quite late in life, about 10 years ago.  Before that, I had been a chest specialist, and as part of training to be a chest specialist, you spend a few weeks in a hospice learning about palliative medicine. I really enjoyed that time and saw how satisfying that work could be.  Coincidentally, I became friendly with the medical director there as our paths often crossed in our local hospital, as we cared for many shared patients, especially those with cancers in their lungs and other serious respiratory diseases.

Fast forward 12 years and that same local hospice was running into difficulties – one of their consultants was due to retire but they were unable to recruit anyone to take his job. I bumped into the medical director, and we discussed my being “re-treaded” as a palliative care specialist to fill that gap. If I had not done this there was a risk that the hospice’s services would have been cut. I felt it was very important that the service should continue. There are lots of similarities between chest medicine and palliative medicine, so it was not too big a change, but I still had to do an extra two-year part-time diploma course to qualify me for this position.  It was the best move I ever made!

Do you find it rewarding to work in a hospice?

Yes. The main reward is the privilege of getting to know my dying patients and their families, becoming close to them and supporting them through this sometimes difficult but beautiful time. We can make a great difference to any suffering that people may be undergoing at that time, by very carefully assessing their physical symptoms and using the correct treatments for them. 

But most importantly, working in hospice medicine you realise that suffering is caused by psychological, spiritual and social issues as well as physical ones, and we become expert at helping our patients deal with these as well.  Working as part of a dedicated and very skilled team, with enough time to do our job well, makes this a very worthwhile area of medicine for me.

How does palliative care assist a peaceful death?

Well, the derivation of the word “palliative” comes from the Latin word, “pallium”, which means a cloak.  We cloak the difficult physical, spiritual and psychological symptoms which get in the way of a peaceful death. We can often do this by careful use of medications, but just as important are recognising the dignity and personhood of the patients, befriending them, finding out what was and is important to them in their lives, as well as about their dying.

We listen to the fears and hopes of our patients and help to address those things.  This may be helping build bridges between estranged or angry family members, it may be helping people achieve a last, deeply wished-for thing: some people marry lifelong partners in the last few days before they die, some are able to hold a newly-born grandchild, and some are reconciled to God after years of separation from their religion.  These things can all contribute to a good death, and palliative care is the field of medicine where we can most help people achieve these things.

Can assisted suicide be called “healthcare”?

No. Assisted suicide is the complete antithesis of good health care.  Palliative medicine specialists and others who provide good end-of-life care recognise that a person is dying, meet the person there and accompany them on that journey, focussing on what is now important.   The ethos is to neither hasten, nor unduly delay, death.  The person is the important thing, not the suffering itself. Hastening death by assisted suicide or euthanasia sends completely the opposite message.  We would be saying: “We cannot cope with your suffering, so we are going to hasten your death.”

Doctors generally follow the Hippocratic moral ethos of healthcare. The Hippocratic oath expressly forbids assisting people to take their lives with poisons.  We know that those doctors who look after most dying people – the GPs, palliative care doctors, oncologists and hospital physicians – clearly do not want to be involved in either assisted suicide or euthanasia.

Should assisted suicide be part of mainstream health services?

No. There are many reasons for this.  Perhaps the most important three are:

Firstly, it would break the bond of trust between doctor and patient. Patients would think: “If my doctor thinks speeding up my dying is a good thing to do, how can he or she be trusted to give me good treatment for my illness?”

Secondly, if this were to happen it would encourage more people to consider, and undergo, assisted suicide, prompting the reaction: “If my doctor suggests it, it must be OK.”

Thirdly, making assisted suicide part of mainstream healthcare would divert resources from good clinical care to the ideologically driven assisted suicide service. This is a real issue in jurisdictions where assisted suicide or euthanasia are legal.  Hospices have closed in Canada and in Europe. Countries which permit assisted suicide have seen less improvement in spending on palliative care, which is underfunded everywhere, than in countries that do not permit it.

How do you think young doctors working in hospices will be affected?

Young doctors will feel conflicted. They have been taught to save lives if possible and appropriate, and to heal suffering.  Now they are being told: “We don’t only do that, we also kill people to end their suffering.”

Young doctors will be brutalised and suffer enormous moral distress and harm.  They may well feel betrayed by their seniors and teachers.  Many will leave the profession or move overseas. This already happens for socio-economic reasons and because of the emotional pressure of medicine as it is currently practiced. But this will be magnified enormously if they are expected to kill their patients too.

How would you feel personally if the law is changed to allow assisted suicide?

I would be devastated.  I see the UK as a civilised country with a bedrock of Christian values, and a world leader on many moral issues.  If we look at history, we see Adolf Hitler authorising the first euthanasia, in 1939, of a profoundly disabled child in Leipzig.  Very rapidly, over the next few years, this was extended from assisted dying of children to euthanasia of sick and disabled adults, to the killing of political opponents and then to social groups including Jews, Gypsies, homosexuals, Catholic clergy and nuns and others whom the state deemed unworthy to live.

Proponents of assisted suicide and euthanasia try to reassure us that there will be strong safeguards in place, and it will be restricted to those with real suffering and terminal illness. But these reassurances are hollow.  The slope is slippery and very steep; a black ski run, really. 

Canada’s MAiD (Medical Assistance in Dying) policy, which permits assisted suicide and euthanasia, no longer requires a person to have a terminal illness. Anyone can have it if they are suffering. Canada is about to allow assisted suicide/euthanasia for people with psychiatric illness. And MAiD is now so easy to get that people are opting for assisted suicide/euthanasia rather than waiting a long time for disability aids, or even because they cannot afford their rent! 

There have been prosecutions in the Netherlands for the involuntary euthanasia of dementia sufferers. In Oregon, many of those prescribed the lethal medication for assisted suicide are still alive more than six months later. They did not take the lethal medications, but the fact that they were still alive shows that the “terminal” illness diagnosis was wrong!

If the law is changed would you work in a hospice where assisted suicide was carried out?

This is a tricky question.  There is no doubt I would find it very uncomfortable.  I know that assisted suicide is profoundly wrong and would not get involved myself.  But those patients who do not opt for assisted suicide would need doctors whom they could trust not to suggest it or pressure them into it, in order for them to feel safe.

There would also be enormous tensions between those clinicians who would be involved in assisted suicide and those who would not.  Hospices work well at the moment because of a strong team spirit with a common goal of relieving suffering without hastening death.  This would all disappear.

Most palliative care doctors are strongly against assisted suicide, and we are fighting hard to make sure the good work of hospices is not jeopardised in this way.  If we fail in this, and if my hospice were to undertake assisted suicide, I would probably, sadly, feel I had to leave.  Other doctors in the UK feel the same way. In Canada, for example, where assisted suicide and euthanasia are legal, they are already leaving.  I would look for a place where I could work effectively and in line with my conscience. Hopefully, this would be at another hospice in the UK, but if not, perhaps abroad.

What is your view of the media narrative around assisted suicide?

The media narrative is very worrying. The media needs to sell stories, but so many of their stories about assisted dying, and the people who they claim would benefit from it, are not only very one-sided, but they also use emotion to cloud the truth.  In general, the media seem to be pushing for a change in the law.

Media stories often claim, for example, that motor neurone disease (MND) causes terrible deaths due to suffocation and terrible suffering due to loss of bodily function. Therefore, assisted suicide should be offered to people with MND. 

Well, we have recently seen the inspiring story of the motor neurone sufferer and rugby star Rob Burrow, who died in June 2024. He lived a full and fulfilling life right until the end and he died very peacefully. He had expressed his wishes in advance about treatment at end-of-life and had accepted his time was up. He didn’t want any attempts to restart his heart, but he did not ask for things to be hastened. He denied further resuscitation efforts.  This story, and my experience of looking after several motor neurone disease patients who had calm and peaceful deaths, make the false narrative of the media frustrating and dangerous.

It is worth bearing in mind that it is very difficult to predict how long someone with motor neurone disease (MND) will live.  Using MND cases to push for assisted suicide is disingenuous. Most MND patients would be unlikely to qualify for assisted dying under the current proposals, as these require someone to have a terminal illness with less than six months to live. Many people with MND live for many years.

The media also use tales of people whose relatives died amidst great suffering.  However, these stories are never complete.  We are not given proper details of their illness, we never properly hear what care they had received, we never hear the real background to the social history or spiritual worries that might be making death unpleasant for that person, and, usually, we never hear whether they were under a hospice or other palliative care service.

It is not surprising that some people in the UK have suboptimal care the end of life, given that an estimated 100,000 people or more, who could benefit from palliative care, do not receive it!

Do you think the public could start confusing assisted suicide with palliative care amid the media presentation of assisted suicide as peaceful and painless?

There is already great confusion!  People think that hospices already shorten people’s lives using powerful medications to ease their suffering.  Of course, this is not true, but it is all about perception.  Powerful drugs such as morphine and benzodiazepines are used to control symptoms such as pain, breathlessness and anxiety at the end of life. However, in palliative care the doses used are just enough to control the symptoms.  Research shows that used this way, lives are not shortened. In fact, people may actually live a bit longer than they would without the medications.

The trouble is, people have often not seen what a natural, good death can look like, and are taken in by the horror stories they hear in the media and from pro-assisted suicide pressure groups.  In earlier generations, extended families looked after dying people at home. It was normal to have seen grandparents, for example, peacefully passing away in their room.  Today’s atomised society means this does not happen.  The shortage of palliative care provision, leading to people not receiving it who would benefit, could also be contributing to the confusion.

You only need to look at studies from the Netherlands and reports from Oregon to understand that assisted suicide cannot guarantee a peaceful, calm death. The lethal medications are difficult to take, they can cause nausea and seizures, they can take nearly a week to kill the patient and they can fail to work altogether.  Not a peaceful, pleasant death at all.

What does a good death in a hospice look like?

I can answer this best by telling the story of Consuela*. Consuela was a lovely but very troubled lady whom we cared for a while ago. She had advanced breast cancer, and had undergone years of surgery, chemotherapy, and radiotherapy.

She had complex social circumstances; she was from overseas, she had relationships which were problematical, he had been married several times, and had had abusive partners. A recent family suicide had led to a crisis.

Despite initial improvement in treatment, her cancer now spread, including to her bones and liver. She was already on the books of the hospice but tended to keep herself at arm’s length.

Her GP asked our team to increase contact after his practice nurses flagged up that her symptoms were worsening. They were visiting Consuela regularly to put dressings on infected sores on her arm, which had swollen up enormously, due to cancer recurring in the lymph channels which take fluid away from the arm. She found this horrific – and couldn’t look at it.

One of our specialist hospice nurses visited her, and after initial reluctance, she was able to persuade Consuela to come in for a “symptom control” admission – to help with sores, and to treat the severe bone pain caused by her cancer secondaries.

She was in a very bad place, physically, emotionally and spiritually. She had had enough and felt she wanted to die. She spent nearly all day in bed. She was really suffering, in so many ways.

When Consuela arrived, she was dismissive of our help. She asked us to “give her something to end it all” and wanted, initially, to be alone.  But after a few days of listening to her, showing we understood her, explaining her symptoms and how we could relieve them, and getting her to believe she had some living to do, we were able to relieve her pain and anguish.

Consuela was then able to sit up and talk and laugh again – with staff and family. She started going round to our “day hospice”, taking part in art classes, and accepting the alternative therapy “spa” treatments there.

After a few weeks Consuela was able to go home for a day, and then for longer periods, eventually staying for a couple of weeks, with visits from her overseas family. She was supported by hospice nurses and our family support team of counsellors, and our chaplains.

Consuela then became suddenly much weaker, and she was brought back into the hospice. She was able to smile at the staff looking after her and share a few words before she died peacefully that night, with her physical symptoms and spiritual angst largely controlled.

*Name changed

 

The privilege of caring for my dying patients

Palliative care consultant Dr Dominic Whitehouse tells SPUC about working in a hospice, why assisted suicide is dangerous and why he would be devastat...

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