Providing effective end-of-life care to patients and their families

Note from Steve Wells: I am so pleased to present this touching and inspiring article by Sue Marsden and Mandy Parris-Piper on their team approach to tapping in palliative care. Sue has been integral in getting tapping accepted into palliative care in New Zealand and she has now gathered together a team of medical professionals and nurses who use tapping to help patients. The fruits of her labours are evident in these writings.

By Sue Marsden and Mandy Parris-Piper

These are the musings of two Palliative Medicine Specialists on using SET tapping and Intention Tapping / IEP in palliative care. We would like to describe two case examples where we found working as a team particularly helpful and gratifying. Sue Marsden has worked in Palliative Medicine for more than 30 years and was first introduced to tapping using EFT (Emotional Freedom Techniques) about 20 years ago by a psychotherapy colleague.

Sue: “To someone trained in traditional western medicine  it seemed like a very odd technique for working with distress at the time. I was—cynical. However, I had great respect for and trust in my therapy colleague not to try and introduce me to some flaky practice.

I was soon convinced of the benefits of EFT and found it really helpful for working with my personal anxiety, stress and distress. I quickly saw its potential for palliative care patients who, by the very nature of being forced to face their mortality, are dealing with multiple losses, fears, anger, frustrations, indeed the full gamut of human emotions.

Quite soon, however, I  found the statements and prescriptiveness of EFT were cumbersome and many of my patients just did not have the energy and focus for what was entailed.

Then I met Steve Wells and Dr David Lake at a workshop in Sydney. This dynamic duo had simplified the tapping technique and developed SET (Simple Energy Techniques) as well as PET (Provocative Energy Techniques). They had found that the words and algorithms that I was finding awkward with EFT were actually not necessary to get results. So, I was hooked. I have found their techniques invaluable in my personal self-care/awareness work.  

Working in palliative care, self- awareness is not just something useful, I strongly believe it to be essential and a clinical responsibility. And here was a wonderfully simple technique to help.

Most importantly, SET was easier for patients and their families and introducing it to them has been very gratifying. It can be used as a tool to help manage distress especially where anxiety and fear are issues. Because of its simplicity and effectiveness, it can be particularly helpful in managing the anxiety component of breathlessness which is all too common in palliative care. Patients find it empowering to have a simple tool to use rather than always needing to reach for medication.

In some situations where the person is too distressed and/or too weak, and with permission, I have tapped on points for them, and this has relieved their distress significantly.

Steve’s development of Intention tapping (IEP) has provided a further exciting dimension to acupoint tapping. 

Harbour Hospice has been fortunate to have Steve conduct two Intention Tapping workshops in recent years. This has meant that there are now a number of health care professionals who are familiar with the technique. As well as using it for their own self-care/awareness, it has been gratifying to be able to use it to work with patients as a team.”

Mandy Parris-Piper is also a Palliative Medicine Specialist working at Harbour Hospice in Auckland.

Mandy: Sue and I met during my palliative medicine training and from then she has provided me with valuable mentoring. Sue first introduced me to SET and PET to help with personal anxieties that I was experiencing. The techniques have proved to be a very effective way of dealing with unwelcome emotional reactions and distress. Techniques I only wish I had been familiar with earlier!

I have been fortunate to attend both of Steve’s Auckland workshops on Intention Tapping (IEP) alongside several colleagues. These techniques have become part of my routine morning practice and regularly integrated into patient and family care.  In the clinical setting I have found them effective in helping with the symptoms of breathlessness, pain, insomnia and anxiety.

I, too, strongly believe that self-awareness and self-care are not only essential for wellbeing but are a clinical responsibility in order to be fully ‘present’, when providing care to patients and families during their journey towards the end of life.”

The following are two examples of working with palliative care patients using Intention Tapping where we were able to provide some continuity using the process.

Often because of the nature of our practice and the limited stamina of patients, interventions are necessarily short.

James was a man in his 60s with secondary cancer in his lungs.

He had been admitted to the inpatient hospice unit with uncontrolled pain. A long history of anxiety and apparent sensitivity to many pain medications had made his symptom management difficult. Also, he had a couple of weeks before had an admission to hospital with a recurrent pleural effusion (buildup of fluid on the lungs). To manage this the fluid had been drained and then talc inserted to try and stick the pleural layers together to try and stop the fluid recurring. This is often a painful procedure if pain management is not well attended to. The drain had been removed and the site of the drain in his chest wall was where his pain was worst.

Sue: “When I met James, he had been in the hospice inpatient unit a few days and his pain was improving but control was not optimal. Shortness of breath was a persistent problem. As I talked with James, as soon as he mentioned the talc pleurodesis, he became distraught and burst into tears. His distress gradually passed but later that day when I saw him again the same thing happened when the talc pleurodesis was mentioned.

Thinking about James that evening and his response I wondered whether he would be open to tapping. The next morning when I went into see him, I offered to teach him, presenting it as a relaxation technique. He responded well to the suggestion and as we tapped together his breathing became freer and he visibly relaxed. I then deliberately asked him about his experience with the talc pleurodesis. Again, he was upset. As we talked it became clear that it wasn’t the actual physical pain that haunted him. Rather, he was distressed that the doctor who had done the procedure and the nurse assisting had barely acknowledged him and had appeared to walk out without concern for him.

I suggested that while tapping he say ‘I release all my emotional attachments to being abandoned when in pain.’

His energy almost instantly shifted and he seemed calmer. His breathing became easier.

I then added ‘I restore the right energy flow to my chest and my breathing’ as a follow on.

He appeared more relaxed and his breathing even easier.

I then suggested he say ‘I put my bad talc experience back in the past where it actually happened’.

His breathing became again a little easier and deeper. He even smiled.

This session took 15-20minutes and by then James was tired and so I left him, suggesting he use the tapping points whenever his anxiety was troubling him.

The next day when he was seen he spoke about the talc pleurodesis with staff without his previous distress. Importantly, this response (actually lack of distressing emotional response) was sustained in coming days.

Over the next 2-3 days, James physical condition deteriorated with increased frailty, cough and nausea. When I saw him one morning he was complaining of nausea and was clearly very anxious and feeling miserable. He spoke of being very anxious about phoning his son who lived in Germany where he was with the military police. James had not told his son that he was unwell, let alone dying. I suggested that he tap on this anxiety, but he felt too weak. I asked him if I could tap the points for him to which he agreed.

I suggested and asked him to say, ‘I release all my emotional attachments to calling my son and speaking with my son and telling him that I am dying’.

The effect of this was an immediate increase in the depth of his breathing.

I thus followed this, continuing to tap for him, by suggesting he say, ‘I restore the right energy flow to my breathing and my nausea’.

Next, James spoke of being concerned about what his son might try to do, how really difficult it would be for him to try and come to NZ, the effect on him both personally and on his career. He worried about his son trying to decide what to do.

I suggested, again continuing to tap for him, ‘I release all my emotional attachments that my son is not capable of making his own decisions.’

This seemed to relax him, and we again followed with ‘I restore the right energy balance and flow to my breathing’.

This again took about 15minutes and was about the limit of James’ energy at the time.

During this session, the nurse looking after James, was in the background and had decided to tap with us. He reported that he observed James becoming visibly calmer and reported that he also felt the calming influence of tapping on himself!

James’ condition apparently deteriorated over the next few days and his symptoms of nausea, cough and anxiety worsened. It was thought that he was close to dying and his symptoms treated, with complete emphasis on medications. However, Mandy identified with him that James’ main suffering was that he hadn’t had the opportunity to actually call his son. Mandy will take up the story.

Mandy: “James had continued to physically deteriorate. He was extremely unwell with increasing shortness of breath and pain that was challenging to control and requiring increasing amounts of medications. The team’s feeling was that James was dying as result of an overwhelming disease burden and that his time was measured in days. He appeared so troubled and distressed by unrelenting symptoms. Sue had shared earlier that James had been receptive to tapping which at the time had seen a considerable shift in his symptoms and in particular his anxiety in relation to a previous hospital experience.

I sat with him quietly with the nurse who had been alongside Sue previously. Gently we explored his wishes for his end-of-life care; where this would occur and who he wanted to be with. What was most important to him now that time was short? As we talked his anxiety escalated as did his pain and shortness of breath.

I asked whether we could tap together as it had been helpful in the past. He agreed, fatiguing quickly as he spoke.  He allowed me to tap on the points for him. The nurse also familiar with tapping, tapped along while sitting alongside him.

I asked him to repeat “I restore the right energy flow to my chest”.

There was a definite shift in anxiety and distress. Calmer, he was able to share how distressed he was about calling his son and how conflicted he felt. He still hadn’t told any family member that he had cancer, let alone that he was now dying.   We explored why and he shared the regret of ‘giving up’ his son to his ex-wife 20 years ago and that ‘he grieved the opportunity of being a good dad and having that relationship’. Two years ago, they had in fact finally reconnected and ‘we got on so well. It was perfect. I could see so much of me in him. I was so proud. He has joined the army in Germany’. They had reconnected and now he had to tell him that he was dying.

I asked what would bring peace at this time. ‘Talking to him. Telling him I love him and that I’m sorry. I want to wish him well for the future’. During this time, I had been gently tapping on his acupoints.

I asked him to say ‘I release all my emotional attachments to regret.’ 

This was followed by ‘I restore the right energy flow to my heart.’

That evening he phoned his son in Germany.

Over the next 2 days James physically improved! He started day trips home from the inpatient unit and eventually was discharged home to be cared for by his partner.  I visited him several times at home. He had prepared a parcel for his son with photos he had kept of them when he was a baby, books, and personal items. 

James died a peaceful death at home with minimal symptoms about two weeks later.”

The second person is Mary. She was a 60-year-old woman with very advanced malignancy in her abdomen. She had had ongoing problems with pain which had been very difficult to manage. Some of the difficulty was that she was reluctant to take medications that were suggested. The reasons for this were complex. She was a complementary therapist and did not want to be dependent on medications and was suspicious of them.  However gradually working with the team she had come to accept the place of pain medications.

Mary had required admission to the hospice inpatient unit as her disease progressed and her symptoms got worse, to try and improve her pain management.

Sue: “I was on call in the unit one weekend when Mary was there. Her pain was improving but she was anxious and troubled by the fact that she still had some pain and that she knew her disease was progressing.

I was aware that Mary was familiar with EFT and so asked her whether she still used it. She said that she hadn’t for a while. I suggested that tapping might help her. I introduced her to SET as a simpler version of tapping and we tapped together. She visibly relaxed after just a few minutes. She talked about what a failure she felt that her pain wasn’t being better controlled.

I suggested to her that while she tapped she said ‘I release all my emotional attachments to being a failure that I can’t control my pain’.

This she did and took a very deep breath. She smiled and said ‘That feels good’.

This I followed with the suggestion ‘I restore the right energy flow to my stomach”.

She almost immediately looked more relaxed.

Mary continued to require pain medications, of course, but she told me how she felt much less anxious about her pain and more in control.

Mary continued to use SET on a regular basis and later did more Intention Tapping with Mandy.

Mandy: “I had got to know Mary over several months in the community visiting her at home. She was conflicted by her health beliefs and had expressed disappointment that both alternative natural health practices and conventional medicine had failed her. She had unrelenting pain, nausea and vomiting which had resulted in numerous admissions to the hospice inpatient unit.

Her daughter, Clare, struggled to see Mary fading away and in so much pain and asked whether we could sit together and ask what her wishes for her end-of-life care were as she hadn’t been able to explore this previously with her mother.

Mary was still in the inpatient unit. Although her pain was better controlled, she was very emaciated and extremely fatigued. She asked why this was the case. I explained gently that it was to be expected in the context of her advanced disease burden. With her daughter beside her this led into conversation around her wishes as she becomes less well. This conversation did not go so well….. Mary shut it down quickly. She attributed all her symptoms to pain medications and her previous chemotherapy which not only had failed her but it also “poisoned me”. She asked me to leave.

I returned the next morning, and we sat together in the sun outside. Mary was quiet. She explained that the conversation we had had the day before had sent her back to a year previously when her Oncologist told her that her cancer was ‘terminal’. It seemed that like her Oncologist, I had failed her. She was angry, tearful and seemed withdrawn.

I asked whether she would like to tap together, and she immediately agreed. I was aware of building anxiety within myself as I had known my intention the previous day had certainly not been to add to her distress. As we both tapped on acupoints together I instantly felt a shift in my own anxiety and rapid heart rate.

Mary took several deep breaths as she tapped. Her body language changed, and she appeared calmer.

I asked her to repeat ‘I release all my emotional attachments to being let down’ which she did…. And without prompting….

She rolled out:

‘I release all my emotional attachments to the ***** treatment not working.’

‘I release all my emotional attachments to the **** Oncologist & my homeopathic treatments being useless.’

‘I release all my emotional attachments to being angry with Clare ‘

‘I release all my emotional attachments to not be worthy of good care’.

‘I release all my emotional attachments to being a bad wife, nana and mother’.

I didn’t need to say anything. Her emotions (her anger and her upset) flowed and flowed.

She then repeated; ‘I restore the right energy flow to my stomach’.

‘I restore the right energy flow to my chest’.

She became calmer and appeared more grounded.

Through this time, I was tapping too and felt a whole shift in my own emotional response. I certainly released some emotional attachments myself. We ended up laughing together. The whole session lasted about 45 mins.

Mary was discharged from the inpatient unit to home. I met with her there again. She was very frail and dying but appeared accepting of this, surrounded by her family.

She expressed her gratitude, not for the complicated medication regime that have been keeping her physical symptoms controlled but the time we had spent in the sunshine tapping.”

Sue Marsden is a certified Intention Tapping practitioner who offers sessions to people with loss and grief issues and those struggling to come to terms with health challenges. Sessions can be either in person or online.  [email protected]