B3 - Symptom Management
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Physiotherapy in palliative care Pippa Grant
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B3 - Symptom Management
- 1. Pippa Grant October 2014 Physiotherapy in Palliative Care
- 2. Physiotherapists have an integral role to play even in the advanced stages of Palliative Care
- 4. The big picture vs the moment Rapid response Living rather than dying
- 6. Fear of being a burden to others Rehabilitative approach offers hope
- 8. Tension between client wishes and care and safety Coordination and Communication between professionals is vital
- 10. Rehab is seldom offered with a terminal diagnosis But there is still a life to be lived
- 11. To conclude … Physiotherapists have a significant role to play in the advanced stages of Palliative Care
Editor's Notes
- .Introduction Hi everyone. I’m Pippa Grant. I work at Hospice North Shore and have worked there for the past 6 years. As far as I’m aware I belong to an exclusive club of three – physiotherapists employed by Hospices in NZ. Although I have more than 30 years’ experience as a neurological physio and treated people living with a terminal illness I must confess I only had a vague awareness of the field of Palliative care. l vividly remember the look on the friend who told me about the jobs face when I said “but what would a physio do at a hospice?” Now I can assure you I know, and have more than plenty to do. This brings me to the key message of this presentation: (pause) physiotherapy can play an important role for symptom management even in the advanced stages of Palliative Care.
- With permission, I have chosen four patient stories as typical cases of my role. These cases will support my argument that our club of three expand. In my view/vision all hospices in New Zealand will employ physios as a matter of course.
- My first case story is about the Symptom management of Pain At 47, Kate was diagnosed with metastatic sigmoid colon cancer which spread to the lungs, liver and ovaries in spite of several cycles of chemo and other therapies. At about 2 years she developed general joint pain and muscle spasms, particularly in her neck and shoulders. Pain significantly affected her mobility and quality of life. She was having difficulty sleeping, getting out of bed, dressing, showering and walking. She started taking brufen but stopped as she developed severe gastritis. She was admitted to Auckland City Hospital and felt she “hit rock bottom”. An Xray of her cervical spine was normal. The pain did not respond to prednisone and she was discharged after a few days on morphine with a referral to hospice for help with pain issues. The Community Palliative Care nurse asked me help with Kate’s joint pain and got myself and our Palliative Care specialist to see her urgently. The specialist thought that Kates joint pains might be caused by a paraneoplastic syndrome – she ordered blood tests and adjusted her pain meds. Early the next week I saw Kate at home. She had visited a doctor that day and had acupuncture. I was immediately concerned as she was in constant severe pain. She had no active shoulder movement and the humeral head was slightly subluxed. She had a complete rotator cuff tear but no history of trauma. I explained I might be able to help with the pain but the problem wouldn’t improve without surgery, which at that stage wouldn’t be a priority. I treated her with trigger point therapy, soft tissue work including “frictions” to rotator cuff tendons, and kinesiotaped the shoulder for pain relief and support. Her husband was amazed she would even let me touch her shoulder. He gave me a bit of a fright when he told me he was a trained radiographer and asked what anatomical structure I was working on. I also advised them why a sling would be of limited use and why taping was better referring them to youtube for taping techniques. I suggested a steroid injection might help and rang the GP who was able to visit and give her one the next day. A couple of days later, Kate’s husband asking me to visit urgently as she had experienced good short-term relief from my treatment. He had tried the taping but didn’t think it had worked. When I got there, Kate was distressed. She was weak, shaky and continuously having to brace herself and breathe through the pain. She described it as more than 10/10 and was needing several extra doses of morphine for breakthrough pain. Her husband and I convinced her to agree to be admitted to our inpatient unit for symptom management and particularly further investigation of the pain A CT scan the next day showed a large destructive osseous lesion in the left glenoid and the day after Kate had a single fraction of radiotherapy to this. She was started dexamethasone and also given fentanyl spray for incident pain which she used before our daily therapy sessions. After 2 weeks she went home. Her husband reported that her pain was much better so she didn’t need me to visit. I saw Kate one more time for another issue and she died peacefully a few weeks later.
- This story illustrates that although in the big picture physios can’t do much, in the moment we can. Being part of the hospice team means that with a rapidly changing clinical picture such as this I can act quickly and I have direct access to a responsive team. Kate was happy and grateful to accept help with her pain issues but very reluctant to accept help she perceived as “hospice” such as a walker or hospital bed. She was in living rather than dying mode right to the end and was happy when I could genuinely say that she was looking better than on my previous visit.
- This story is around the Symptom management of breathlessness At 81 and suffering from end-stage COPD, Bob went through the added trauma of seeing his home destroyed in the Christchurch earthquake. He was forced to move to his daughter’s place in Auckland, leaving behind his beloved wife of 30 years. He had major problems with anxiety and breathlessness, often waking at night gasping, coughing and choking. Bob’s daughter was more than happy to be involved in his care but he worried about being a burden. Bob had discussed death and dying with his respiratory physician and established he no longer wanted any active treatment for his condition. So we had an ambulance letter and medications put in place so paramedics, if called, could provide symptom relief and if necessary admit him to hospice rather than hospital. My involvement included building on and practising a step-by-step plan for times when he was panicky and breathless. On waking, he immediately took midazolam spray, morphine elixir if he was having coughing spasms, and his broncho-dilator via the spacer. He then sat in a lean-forward position on a couch beside the bed and turned a portable fan on his face. The next step was to try to slow his breathing down using breathing and relaxation techniques. If his daughter was awake, she would coach him through these steps and repeat if necessary. When Bob felt relatively well, we were able to adopt a more rehabilitative approach. We would work on breathing, relaxation, visualisation and mindfulness techniques some of which were on CD. I also gave him a simple exercise programme, which included walking with his walker and pacing himself through his activities of daily living. We provided him with an oxygen concentrator, which he used with activity, and a nebuliser. When he was less well such as the time I had a call from the GP practice nurse to say he was “drowning in his secretions”, I did traditional chest physio techniques, such as postural drainage in alternate side lying, vibes, percussion and soft tissue work to the accessory muscles of respiration, and mobilising the chest wall. Like many of the patients I treat suffering breathlessness, Bob reported feeling much better after this treatment. After six months, a private hospital place became available in Christchurch and Bob was happily reunited with his wife.
- Fear of being a burden on others has ben reported to be a more commonly cited reason for requesting euthanasia than uncontrolled pain. A rehabilitative approach can help a person feel they are helping themselves. Evidence from ex interventions with COPD patients has shown improved quality of life and participation, decreased breathlessness, depression, anxiety and hospital admissions .These improvements are significant regardless of disease severity.
- The next story relates to Motor Neurone disease and the image I have chosen is of the book Tuesdays with Morrie which, to those of you not familiar with it, is a wonderful account of one man’s journey of living with MND Anthony was diagnosed with pseudobulbar MND in March. I first met him in December when he started having falls. On the Oxford scale, all Anthony’s muscles were a 2 – he could not contract them against gravity. He was rapidly becoming weaker but still fiercely trying to maintain his independence. He was unable to talk – he communicated via an ipad. He had a PEG but was still eating and occasionally choking. He worked full-time, commuting to the city on the ferry and was still driving. I strongly recommended he use a walker but it would take many more falls, black eyes and bruises for him to start using one. I taught Anthony strategies to get up after a fall but even then he needed some assistance. His son – a student - was around but Anthony didn’t want him seeing him lying on the ground. Their house was a nightmare for wheelchair access and the community OT and I made two long visits to set up appropriate aids and equipment. When Anthony finally did give up work, Taikura Trust were able to provide a carer. Together we worked to solve moving and handling challenges as they arose. Anthony wouldn’t consider moving to a more accessible house because, as his wife said, he expected to live for at least another 10 years. We had regular monthly meetings at our Hospice for all health professionals involved in treating MND patients in WDHB, so we organised a case conference for Anthony to decide with the family how we could all best support them and co-ordinate his care. It was a huge meeting. Thirteen health professionals attended and all Anthony’s family – his wife, children, brothers and his mother, who, 30 years ago, had nursed her husband through the same disease with little support and not even knowing it was MND! As Anthony got weaker he became confined to his house in a power chair with a hoist for transfers. Mobility, safety and access became less of a problem than carer exhaustion and respiratory issues - particularly managing secretions. His excess saliva and drooling was helped significantly with scopaderm patches but he had thick stringy mucus that built up through the day and extreme difficulty clearing this at night. I had many conversations and email exchanges with the specialist, speech language therapist and community physios about how to manage the secretions. We tried breathing techniques such as breath stacking, postural drainage with vibes and percussion, assisted coughing using mucolytic agents such as Robotussin Plus through the PEG and a nebuliser. Right to the end, Anthony had clear ideas of what he wanted which was sometimes hard on the carers. For example, he insisted on wearing his tight jeans which made dressing and toileting that much more difficult. And when he was finally persuaded to come into our inpatient unit for urgent respite care because his wife was at her wit’s end he only stayed for a couple of days before insisting he go home. He died relatively unexpectedly soon after.
- In cases like these, where a person is physically and probably cognitively declining, there can be tension between their wishes and what is easier and safest for them, their carers and those around them. Anthony was driving, working, walking and eating long after it was safe for him to do so. Co-ordination of care and consistent communication are both crucial and in cases of rapid physical decline such as this physiotherapists can play a key role.
- My final case which illustrates the bulk of my work and is probably what physio is most associated with is about Mobility This is Sally Sally was referred to me by a physio at North Shore Hospital. She had been an inpatient for a course of radiotherapy for a pelvic mass in the right sacroiliac area. Six months earlier she had developed right hip pain. Her physio eventually sent her to an orthopaedic surgeon who diagnosed metastatic melanoma. On my initial visit, Sally was in a hospital bed. Her right leg was swollen and painful. She was experiencing 10/10 pain radiating down her thigh on mobilising and 2/10 pain at rest. I gave her a lymphatic massage for the oedema and active assisted bed exercises. I checked her equipment and advised on the home environment. Over the next month I visited weekly. I kinesiotaped her leg but as Sally wasn’t sure if this had helped, I ordered her a light compression stocking instead. She was soon able to walk to the living room but needed close supervision. She was dizzy on standing, her leg was painful and weak and she had a marked lopsided gait. Once she could tolerate standing, we started working on the exercises the hospital physio had given her. The pain and swelling improved quite quickly but she still experienced stiffness and heaviness in the right leg. Sally was fortunate to have a carer happy to learn massage techniques from me and to help her with daily exercises .They developed a great routine and she could proudly show me how she was able to open her ranch slider and garden gate, lift her walker in and out of the house and walk up and down her sloped driveway several times at a good pace, safely and independently. ( stop video) I discharged her from physio but told her she could contact me at any time. Sally is profoundly deaf and lived for years with her great friend Mary, who was also deaf. When I first started seeing Sally, Mary was her mainstay but sadly, Mary herself became unwell and was also on the hospice programme, dying within a few months. However, on a happier note, the carer and her husband moved in with Sally, which meant she could stay in her own home. Now, more than 2 years down the track Sally is leading a relatively independent life - she is often out, walks without a walking aid and is even back driving. Play second segment of video
- Sally’s diagnosis could easily have meant that she was not offered physiotherapy treatment or follow up. Because of my role with the hospice she was referred to me. As a consequence of our work together Sally’s mobility improved significantly. This has made a huge difference to the quality of life she has enjoyed for the past few years which no one expected her to live.
- To conclude, these stories are just a snapshot of a day in the life of a palliative physio, four stories from many I could have related. My experience has been that patients are very keen to see a physio. They desperately want to maintain their independence, make choices, be active and participate. They let us in where they might not let others, perhaps because they see us as a symbol of hope. We help them to believe that they are not giving in and doing their best. Physios are trained to assess and treat respiratory, neurological and musculo-skeletal conditions and many palliative patients end up having issues in all three of these areas. It is hard work psychologically, but when we just focus on “making each day the best day possible” and what we can do in the now, the rewards of making a difference are huge. We can’t fix everything or, sometimes, even anything, but we can always do something. That is why physio should be an essential part of palliative care.