Death doulas in the USA

Emily Dickinson poem: Because I could not stop for Death, He kindly stopped for me. Image from dead maidens.com

Death doulas help people who are facing the end of life alone. Even for people who have family, often no-one wants to talk about death — and that can be very isolating and lonely.

There are increasing numbers of death doulas in the UK, but I thought I would share some of a recent article about death doulas in the USA.

The word “Doula” has often been used to describe those volunteers who offer support and comfort to people during pregnancy. More recently, death doulas — women and men — help those who are dying. The word derives from the Greek for a female servant

Death doulas are volunteers who aren’t medically trained ― they’re there to offer support, to listen, and to develop a relationship with the person they’ve been matched with that goes beyond his or her illness. It’s not so much about being there at the moment of death — though of course that can happen. Instead, it’s more about being present during the final stage of a person’s life and getting to know them on a deeper level than just their illness.

Anybody who has a calling and an open heart can do the work of a death doula.

Unlike most medical professionals, and some birth doulas, there is no national or international body that oversees certification requirements or scope of practice for death doulas.

In New York, The Doula Program to Accompany and Comfort, has about 60 active volunteers, working with people of any age who have been told they are going to die from their illness and who are facing the end of their life alone.

Doulas from the (American) International End of Life Doula Association (INELDA), are also trained to help the family of the dying person plan for and process their death. Since now we’re not used to seeing death, dying can lead to a lot of anxiety. INELDA doulas can help the family put together memory books, videos, audio recordings, and collages ― things to pass down after a person’s death.

Increasing numbers of people are applying for doula training both in the USA and in the UK. Janie Rakow, president of INELDA explained that, although it may seem curious that so many people want to be a companion for those individuals who are dying, it’s not at all morbid. “People always ask how we can do this work. They think it’s depressing,” she said,  “But when you do this work it is the opposite of depressing. It’s profound work.

Deanna Cochran, a hospice nurse and the founder of Quality of Life Care, which trains and certifies death doulas, explains that she isn’t aiming to create another health care profession but to empower individuals everywhere to emotionally support their loved ones as they die.

“I want to get the message out that you can do this too. You can learn to take care of your own dying and dead,” she said.

Cochran encourages death doulas to be advocates for their clients, helping them navigate the medical system and ask their doctors what options might available to them, including palliative care.

“We [all] need to accept that we’re not going to live forever,” Cochran said. “We’re going to die. We just don’t know when, and we don’t know how. Empowerment comes in planning for it and letting your family know what you want.”

But INELDA’s vice president, Jeri Glatter says there’s another way to look at it.

“I see death as an opportunity for change and growth,” he said. “You see awakenings, forgiveness; you see new bonds made and old wounds healed, which I believe send the dying on their final transition peacefully and bring new opportunities for the people who remain.”

Death plans and the law

Cartoon with a bedside family telling a doctor they havent discussed resuscitation preferences

The idea of ‘death plans’ may seem less commonplace than the birth plans produced in so many pregnancies. But at least some aspects of death plans can be legally binding. As always with anything legal, the devil in the detail. And the wording can feel confusing.

I’m shortly going to meet a midwife and I know we will talk about birth plans. Here, then, is a version of something I wrote for Pulse.

Lawyers and doctors don’t talk about death plans – but ‘advance directives’. Advance directives include Advance Statements and Advance Decisions.

Advance Statements are not legally binding, but should always be considered by medical staff

In contrast, Advance Decisions to refuse treatment are legally binding and MUST be followed by medical staff, IF they are valid and applicable. As discussed below, that’s a big IF.

If an Advance Decision refers to potentially life-sustaining treatment, it must must be witnessed, signed and dated.

The details are the big thing here:

  • If the patient didn’t fully understand the consequences of their decision, the clinicians caring for them might conclude the Advance Decision is not valid. There’s lots of room for condescension here!
  • If the patient did or said anything that contradicts the Advance Decision, it might not be considered valid. For example, a patient might have said they wanted comfort measures, rather than trying for a cure, but then accepted antibiotics for a urine infection. This would probably help with symptoms (comfort), but is it really aiming at a cure?
  • If the patient did not anticipate this exact clinical situation within this illness trajectory (how fast or slow the person is getting sick / well) the clinicians might decide the Advance Decision is not applicable. This is another get-out situation: who can anticipate everything?

Advance Decisions are probably most useful for refusing specific interventions like CPR or ventilation and so-called ‘life support’ machines. (I’ve written ‘so-called’ here, as sometimes – just sometimes – all the machines don’t actually support life, but just drag out deaths.)

Even if all the details above are OK, it’s important that Advance Decisions are kept up to date. It’s a good idea to review, re-sign and re-date them whenever clinical and other circumstances change, or every two years if everything is stable. This is so that the doctors treating the patient can be confident that they are following their current wishes.

If you want to set up an Advance Decision, the free My Decisions website https://mydecisions.org.uk will take you through some questions and scenarios to get you thinking about what’s important to you. At the end it will generate a legal document.

A lasting power of attorney (LPA) can be set up by an individual (the ‘donor’) to give an agreed Attorney the legal power to make decisions on behalf of that ‘donor’.

LPA can apply to property and financial affairs; or to health and welfare; or both, if both are set up:

  • In an LPA for health and welfare, a person must specify whether their attorney can make decisions about life-sustaining treatment on their behalf.
  • LPA for health and welfare only come into effect when the patient no longer has capacity to make their own decisions, while financial LPA can start whenever the ‘donor’ chooses.
  • For LPA, there needs to have been full discussion between a patient and their attorney, to truly know what the patient would want.

More details about LPA, including about the £110 fee (unless the donor is on certain benefits or earns less than £12000 a year) is at https://www.gov.uk/power-of-attorney/

Advance Statements are general statements about anything that is important to someone in relation to their future treatment and wellbeing.

They are sometimes called a Statement of Wishes, and are really more Life Plans than Death Plans. They can be used to detail any values or beliefs that inform your decisions or to express preferences for care (for example, hospital or home, male or female carers, specific religious preferences, shower or bath, Aunt Jemima or no Aunt Jemima .. down to Marmite or no Marmite). They are used only when you cant speak for yourself. If you have what’s called ‘capacity’ — the ability to make and communicate decisions — your expressed wishes come first.

None of these instruments gives anyone the right to demand any specific treatments.

Any individual with capacity can set up any or all of these methods of advance care planning. You can have an Advance Directive to refuse something, and an Advance Statement to say you would (or wouldn’t) like something else.

With all these imponderables, for all these ‘instruments’, the discussions may often be even more important than any individual document.

That’s especially true if the process and results are written down. Even if they are initially difficult, explicit discussions mean that families and loved ones know what a patient wants. This is often not what others think, even with close and loving relationships. For example, I have LPA for my mum, and although she said she was sure I knew her well, when I insisted on a discussion, I was really surprised by some of the things she said she didn’t want! These discussions can be much more about Life Plans than Death Plans.

People’s circumstances vary. However, the Alzheimers Society suggest that individuals and families consider LPA after a dementia diagnosis, and to do sooner whilst the person has capacity. This is something GPs can also encourage.

Want help? Online or downloadable Advance Decision and also Advance Statement forms and guidance are here, and there is a freephone information line at 0800 999 2434.

 

Edencare appeal: Ramadan 2017: Friday 2 Jun 6pm-4am: Sky 814

 

I’m proud to be a volunteer for Edencare. This is a BME-led volunteer group helping needy people and families who are nearing the end of life. It works with the community, rather than providing services ‘for’ or ‘to’ needy people.

The Edencare appeal for Ramadan 2017 will be live on Sky 814 on Friday 2 June from 6pm til 4am. If you want to speak to us in the studio, the number is 0208 523 4111. I’m on air from 6 to 7pm – but other members of the Edencare Family will be there all through the night.

If (surely it’s when!) you want to donate, the number is 0208 523 1666

Here’s the 2017 Ramadan appeal video:

The focus this year is the Muslim Burial Fund (MBF). This community led service helps needy Muslims have culturally appropriate funerals. A poster about MBF was selected for the 2016 Hospice UK conference: read more here. See some videos about the Muslim Burial Fund here.

Please donate whatever you can!

Are you immune to death?

Extreme measures: Book by Jessica Zitter: contains exploration of how she thought of herself as immune to death

Jessica Nutik Zitter is an ICU doctor who’s “around death every day” but thinks she’s immune to death. I wanted to share and discuss part of her renowned book: Extreme Measures. This describes how, at a mindfulness seminar, she realised that she had never thought in any real way about her own death. Dr Levy, running the seminar, asked:

“How can we expect to help our patients plan for their deaths if we haven’t planned for ours?”

This is a really important point that Dr Zitter makes, I think. I’m no longer working as a doctor, so I don’t ‘have’ to do this for myself right now. But I’ve got two life-limiting diagnoses, even though I’m not acutely unwell today. I’m hugely in favour of Advance Care Planning. So when ‘should’ I or other ‘ordinary people’ do something like the exercise Dr Zitter describes, as summarised below?

The seminar Dr Zitter attended included an exercise for the participants to picture their own deaths:

•Who would be there?

•What would they be saying?

•Who would be crying?

•What would you have not gotten done?

•For what would you be grateful?

•Who would be holding your hand?

•Who would be standing at the foot of the bed? In the hall?

Dr Zitter realised that she had never allowed herself to consider her own death: “It was as if I had willed myself immune to death.” 

Dr Zitter is apparently Jewish, which gives her a specific opportunity to consider her own death every year, in the Rosh Hashanah (Jewish New Year) service. This includes the prayer Unetaneh Tokef (Let Us Cede Power), which “attests to our lack of control over our mortality, willing us to repent and mend our ways. Its words are sobering, even grisly”. But as Dr Zitter wrote: “Somehow it never felt real …”

When she let the sadness and the possible uncompleted tasks seep in: “the tears started to fall down my cheeks. One big fat one at first, brimming over and paving a salty track down my dry cheek to come to an embarrassing stop at the corner of my mouth. I wasn’t sure if I should lick it or ignore it.” Dr Zitter “realised I’d been running away from [my own death].”

She “began to think more deeply about how I would help all of those walking that path before me. How could I possibly help my patients accept their deaths if I hadn’t stopped to accept mine?”

As she said: “I am, of course, no different from my patients, no better or worse. Often no wiser. And no more entitled to live another day. I reminded myself that death comes for us all, and sooner or later, I will be the one in that bed, on the other end of the stethoscope. I considered what type of doctor I would want to have with me as I made these final decisions, as I breathed my final breaths.”

Of course, those of us who are not doctors, are no different from other ‘patients’ either.

Just like Dr Zitter, I seem to think I’m immune to death!

Dr Zitter struggled especially with her tears: “my mindfulness exercise ended because I needed all of my focus to suppress my impending sobbing. I had been saved from the mortification of being an ICU physician sobbing uncontrollably as I pondered my own death. And right in front of the nurses, physical therapists, and respiratory therapists that I feel I must stand before confidently, never wavering in my resolve that I can make it right for my patient.”

‘Ordinary’ people like me don’t have this particular status problem. But I felt very concerned about why this was a problem for Dr Zitter. Being confident is great. But “never wavering in [her] resolve that [she] can make it right for my [sic!] patient” … ?!

Dr Zitter is an ICU physician. Surely she can’t make it right for all of the ICU patients she and her colleagues deal with?

Or is that another ‘immunity’ that Dr Zitter might want to think about?

BJ Miller on life and death

bj miller sitting on bed in zen hospice

BJ Miller was the keynote speaker at the RSM conference on the future of palliative care. As a student, he climbed onto a parked train — and the subsequent burns removed both of his legs and an arm. Hear from him directly in his TED talk here.

For months afterwards, he was an inpatient in a no-windows, super-sterile burns unit. All the staff and visitors had to be gowned-up at all times, so it was a very alien, dehumanising experience. BJ had the sweet goal of being closer to nature, and a nurse smuggled in a snowball for him.

Melting in BJ’s hand, this was an amazing sensory /aesthetic experience. It was also hugely symbolic: he saw that it was OK for something to melt and transform — at a time when his own life was melting and transforming in just as dramatic a way.

BJ’s personal encounter with the world of suffering and mortality means he has thought long and hard. Here are some of his ideas — as I understand them. My deep apologies if I haven’t got all of this right!

  • The myth of Western medicine is that all things can be ‘fixed’.

With this idea of omnipotence, the prolongation of life / avoidance of death ends up in direct contradiction to the alleviation of suffering.

The education of clinicians focuses on acute ‘curative’ interventions.

  • In medical school, medical students learn a dichotomy of normality / illness, within a pathologising convention of contrasts.

This is not ‘the truth’ .

  • Variation on the ‘normal’ is itself NORMAL

  • Even though many more people need long-term support, than are ever going to be cured by doctors, the support of people with long-term conditions is seen as much less important or interesting than ‘cures’.
  • All this means that western healthcare systems are much more about ‘doing something’ to someone, than ‘being with’ a person or their family.

In this way, western medicine acts as a poor substitute for a bigger reality.

  • This is brought into especially sharp focus for people with a disability.

The disability population / disability activists, understandably, have a deep distrust of the pathologising convention of a ‘split’ between normality / illness.

They also feel often repugnance about the ‘special’ (NOT so special!) treatment afforded to people with disabilities.

BJ questioned — in a positive way — what it is to be human. He discussed how an individual may not be able to literally overcome their disability, but will have to ‘lean into’ their daily reality.

BJ then raised questions / made suggestions about palliative care.

  • Traditionally, palliative care is about helping people live until they die, not fearing death, but welcoming inevitable transformations.

The value-laden dichotomy between trying to ‘fix’ individuals / and alleviating their suffering underlies many problems, including:

  • the (often difficult) transition for individuals (and families) between curative and palliative care;
  • how medical professionals view palliative care clinicians (poorly — as flaky non-scientists);
  • and, maybe, how some palliative care professionals are taking the specialty forward (strengthening the ‘evidence base’ so they are no longer seen as flaky non-scientists).

Ideally, moving beyond a dichotomy between ‘curing’ and ‘caring’, would have ALL medicine smelling and feeling like the best bits of palliative care.

But what is the way to move forward? What is the switch?

It’s not going to be sorted by anything in current medical schools, or current postgraduate education.

We need to move from a disease orientation towards a human orientation.

After all, humans are not incidental to medicine.

This means:

  • More love;
  • More awe and wonder. This is usually absent in clinical encounters — but is transformative. And it is all around us;
  • More on being comfortable with not knowing what to do.

This is not to throw away or ignore science or medicine.

  • Science is necessary, but not the slightest bit sufficient.

Evidence-based symptom management can act well as a first step. After that, individuals and their families can move on to:

  • daring to live life;
  • revealing themselves;
  • recognising fear, pain, and hope.

Muslim burials with Edencare: a simple act of kindness

This week I was honoured to attend the Muslim burial of baby Adam Hussain.

Funeral costs are rising at around 10 times the cost of inflation. Burials cost even more than cremations, and same-day or very quick burials are a key part of end of life care for Muslims. This means that needy Muslims can have serious financial problems after someone dies. The video below describes how Edencare helped with the practical and financial issues of Adam Hussain’s Muslim burial.

I’m not a Muslim myself (as you can see, from my sloppy headscarf!) but attended in support of the family, and the other members of the Edencare team.

I support the simple acts of kindness offered by Edencare and their Muslim burial fund. As part of that, I’ve already have been on some Muslim burial training with Edencare, as in the video here:

The training was a very full explanation of the things that are compulsory and permitted in a Muslim burial

Imams often get a bad press, but the the man training us was obviously very caring, as well as an eminent scholar. It’s easy to get fixated on specific details of a Muslim funeral but, as he said: be as gentle with a dead body as you would be with a live person. The key thing is to do the best for the person.

If you would like to support Edencare, please donate through: www.JustGiving.com/EdencareUK

Diagnosis: eyes first and most – surely ears are next?

Diagnosis is “eyes first and most, hands next and least” – according to Neel Sharma, writing in the BMJ.

I think, though, that ears come a close second.

Sharma titled his piece courtesy of Sir Lancelot Spratt (played by James Robertson Justice in the film Doctor in the House). And Spratt is indeed explicit about eyes first, hands next. I’m sure Sharma is not altogether advocating the Spratt approach. After all, if you watch all of the suggested video, Spratt says “tongue not at all”. As well as telling the poor patient that “you won’t understand our medical talk”.

It’s not a new idea that ears are important.

Osler said “Listen to the patient, he is telling you the diagnosis”.

I’d go further. When the patient tells the doctor their story, I think he or she is often also telling the doctor a lot about the management. Does this patient simply need to tell their tale? Do they want a strictly medical approach? Or do they have other – and often very specific – ideas?

Sharma’s article helpfully underlines the importance of the traditional clinical skills of looking, palpating, percussing and auscultating (listening with a stethoscope). I wish, that he’d added some more primary care examples of the value of observing. And not only for specific medical diagnoses. But for more of the so-called ‘soft’ and mental health diagnoses that cause so much pain to patients – and doctors too.

One way forward would be to move right away from the idea of ‘taking’ a history.

‘Taking a history’ is what I was taught to do in medical school. But now, as a patient, I know just how annoying / frustrating / infuriating / throughly unhelpful it is for a clinician to ‘take’ my history. They may have ticked all their boxes. But they often (actually, it’s usually) have no idea about my concerns or ideas. So, their ideas about what should happen next are of very little help to me.

Of course there are some important exceptions. The patients who don’t think their exercise-induced left sided chest pain is anything to bother about, for example.

But surely the point of a patient consulting a doctor is not to fit that individual into the set-up of the clinician’s clinic? I think that even the idea of a clinic ‘belonging’ to a clinician is wrong. Sharma ends his piece by agreeing with Sir Lancelot Spratt’s thoughts on success: “you need the eyes of a hawk and the heart of a lion.”

The eyes of a hawk must be a good idea. But the heart of a lion?

It’s another sort of bravery that’s needed to stand beside the huge number of individuals and families living with chronic and life-limiting conditions.

 

Exercise for the brain! 

A meta-analysis in the British Journal of Sports Medicine has underlined how important exercise is for brain power in the over 50s (that’s me!)

Looking at the results of 39 papers: “The effect of exercise on cognition was statistically significant for all domains, except global cognition.”

In other words, exercise may not actually make you smarter, but it will help preserve brain function

Resistance training (with weights or exercise bands) was good for executive function (organising oneself to achieve a goal, using skills of mental control and self-regulation), memory and working memory (temporarily holding information available for processing).

Tai Chi seems to do well too. Although there are not very many studies, it seems to help working memory.

The more often you exercise, the better results you get. Intensity and duration is apparently less important (even though that does seem surprising).

Overall: “The findings suggest that exercise programme with components of both aerobic and resistance type training, of at least moderate intensity and at least 45 minutes per session, on as many days of the week as possible, is beneficial for cognitive function in adults aged over 50.”

Those who are more socially active, and those doing the ‘sham exercise’ of stretching, have almost as good results as exercisers. In fact, the researchers say “the effect size was still positive but no longer statistically significant”. What they actually mean here is that, scientifically speaking, there is no difference between exercisers and the socially active, or even those doing stretching.

I’m going to recommend James Thompson’s blog if you want more details but feel that reading the original paper is too challenging for you. He explains much of the science-ey stuff very clearly, even if he summarises the paper as something “which might provoke some people to walk about a bit, which is no problem so long as they do not clog up the traffic.”

As someone aged over 50 who lives just behind Oxford Circus, I know that shoppers, tourists, and (only this last is understandable / excusable) those pushing a pram, or just out of their pram are much more of a bother to other pedestrians than me!

But pity poor Mr Thompson. Has no-one told him that he’s getting older every single day?


 

A patients eye view of CPR?

Mark Murphy’s Out of This World is billed as “genre-defying action packed theatre”— but I wonder if it is also trying to give a patients eye view of CPR / ICU?

I watched Mark Murphy and VTOL decades ago, when they first mixed dance and film: and remember how entrancing it was to see people dancing with projected versions of themselves, and with film back-projected to look like someone was falling — or were they pushed? — out of a very tall building.

I knew Mark was bound to have thought up something very different. And so he has for Out of this World.

The storyline is based on a car crash — a woman, we quickly realise, is put in a medically induced coma, and her new husband ends up brain dead. There’s what looks like a fair few professionals looming over the victim/survivor. With views in the middle of above from someone who is, presumably, nearly dying.

Although the story is supposed to be about love, I couldn’t get too interested in that element. It’s not only me who felt like that — see the Guardian review here.

But the technical parts of the show are amazing. People walk up — and down — walls in the smoothest of ways. Look at the rehearsal footage above to get an idea of the mouthdropping aerial work. The nightmare of the coma / memories of the crash / the scan(s) is all definitely nightmarish.

The representations of resuscitation / CPR blend eery accuracy (the doctor’s words) with unsettling images of what it might be like  — or maybe it is like? — from inside the head of a patient.

I avoid watching Holby City / Casualty etc since they never seem very life-like to me. But the words and tone here were just like the ED/A&E Department I (relatively!) recently worked in. So it seems like V-Tol took careful notice of their Medical Research Consultants: an anaesthetist who also leads an air and land ambulance service, and two neurosurgeons.

I want to ask two questions.

First, although all the medical words felt impressively real to me, most of this went over the head of the super-intelligent non-medical friend I went with. Has the non-medical public seen so much of the soap stereotypes that they can’t see beyond them? Is this one of the reasons why the public still have such wildly optimistic ideas about CPR success?

Secondly, the visuals here sucked me into a patients-eye view. Maybe the anaesthetist/neurosurgeons know what it’s like for this sort of patient? Though presumably not for the patients who die? I have  myself shared rare stories from relatives involved in CPR — see here and here. But while doctors (relatively) frequently talk about broken ribs and bruised mouths with CPR, I don’t know of any patient openly talking about what CPR is like. The ones who live are grateful, of course. Presumably the experience is too short for the sort of PTSD that is increasingly recognised for ICU survivors?

The official 1 minute trailer for Out of this World is here

But I think the rehearsal footage is more fun – more aerial, more extreme – and gives a better idea of what I think are the best bits.

Awareness and acceptance?

Awareness and acceptance are often trumpeted as the ‘right’ way to go for patients with a terminal diagnosis.

As a clinician, I certainly saw how people ‘in denial’ (or with their oncologists seemingly in denial!) often had ‘a bad death’, after the inevitable inevitably became clear.

So the idea of being fully aware and ‘accepting’ an impending death definitely seems — on the face of it — the best idea. It’s easy to think that patients and relatives are just foolish if they don’t join in ‘accepting’ what those clever doctors (haven’t quite) said.

I would like to raise some fundamental questions about awareness and acceptance.

After all, some — or maybe it’s many — doctors seem to have what might be described as almost an existential crisis when a patient doesn’t get better. Danielle Ofri has written explicitly about how doctors find it extremely difficult to simply tell the truth to patients, when it seems that curative treatment is unlikely to work. Maybe that is because doctors are trained to do things to make people better. It’s their raison d’etre!

Don’t patients have an even more existential task, when it comes to imagining their own death?

And it’s all very well for clinicians to ‘help’ patients and relatives with awareness and acceptance. When even (relatively time-rich) palliative care clinicians only spend maybe a few hours with each of their patients. After which the doctors can get on with their  own lives.

I’m not saying end of life care is easy for clinicians: the high numbers with burnout show the extent of the problem.

But awareness and acceptance is a 24/7 job for patients and relatives.

So no wonder some patients are into denial.

The most commonly advertised options are to ‘bravely fight’ (most commonly for other sorts of treatment) or indulge (surely we’re all worth it!) in distractional ‘bucket list’ activities.

See linked posts: Brendan McCann’s story about his partner not understanding he had cancer; and my exploration of collusion in doctor-patient communication.