LEAFLETS for PATIENTS:
www.cks.nhs.uk/palliative_cancer_care_dyspnoea/leaflets_for_patients

Association of Chartered Physiotherapists in Oncology and Palliative Care:
www.acpopc.org.uk

GMC GUIDELINES (2010) on TREATMENT and CARE towards the END OF LIFE
www.gmc-uk.org/guidance/ethical_guidance/6858.asp

NHS (2008) END OF LIFE CARE STRATEGY
www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_Core_competences_guide.pdf

NHS Clinical Knowledge Summary on palliative care (includes SOB, secretions, cough):
www.cks.nhs.uk/clinical_topics/by_clinical_specialty/palliative_care

EUROPEAN GUIDELINES on FATIGUE in PALLIATIVE CARE
eapcnet.eu/Themes/Clinical/Publicationsdocuments/EAPCRecommendations/tabid/1499/ctl/Details/ArticleID/113/mid/2812/Fatigue-in-palliative-care-patients-an-EAPC-approach.aspx

Palliative care drugs:
www.palliativedrugs.com/


Abel J (2010) End of life care in hospital. Palliat Med, 24, 2, 206-7
• one third of hospital deaths could be managed at home

Abrahm JL et al (2002) Hospice care for patients with advanced lung disease. Chest, 121, 220-9
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• raises awareness of specialist palliative care for those often deprived of it at the end of life

Ajaj A (2001) Should elderly patients be told they have cancer? Br Med J, 323, 1160

Ahmedzai S (1988) Respiratory distress in the terminally ill patient. Respir Dis in Practice, 5, 5, 20-6

Akechi (1999) Fatigue and its associated factors in ambulatory cancer patients. J Pain Symp Man, 17, 42-8

Albers G (2010) Evaluation of quality-of-life measures for use in palliative care. Palliat Med, 24, 1, 17-38

Argyriou AA (2011) Either called “chemobrain” or “chemofog,” the long-term chemotherapy-induced cognitive decline in cancer survivors is real. J Pain Symptom Manage, 41, 1, 126-139

Bainbridge D, Brazil K, Krueger P (2010) A proposed systems approach to the evaluation of integrated palliative care. BMC Palliative Care, 9:8
www.biomedcentral.com/1472-684X/9/8
• network-integrated care can provide seamless and complex packages of treatment and social support

Barazzetti G (2010) What "best practice" could be in palliative care: an analysis of statements on practice and ethics expressed by the main health organizations. BMC Palliat Care, 9:1
www.biomedcentral.com/1472-684X/9/1

Beach P (2003) Treatment of respiratory congestion in patients with end-stage disease. Clin J Oncol Nurs, 7, 4, 453-5.

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• assessment, and treatment by pharmacological, environmental, and spiritual interventions

Booth (1998) Management of dyspnoea in advanced cancer. Br J Ther Rehab, 5, 6, 282-3

Booth S, Adams L (2001) The shuttle walking test: a reproducible method for evaluating patients with advanced cancer. Thorax, 56, 146-50

Booth S (2004) The use of oxygen in the palliation of breathlessness. A report of the expert working group of the scientific committee of the association of palliative medicine. Resp Med, 98, 66-77
www.sciencedirect.com/science?_ob=ArticleURL&_aset=V-WA-A-W-W-MsSAYWW-UUA-U-AAWAUDDBYZ-AAAYZCYAYZ-AZCDZADEB-W-U&_rdoc=1&_fmt=summary&_udi=B6WWS-49SNBV4-1&_coverDate=01%2F31%2F2004&_cdi=7138&_orig=search&_st=13&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=6ac62da1693b520bc2d55a0954bf224e
• there is little evidence for oxygen relieving SOB; a formal assessment must be made to ensure it reduces breathlessness and improves quality of life

Brajtman S (2005) Helping the family through the experience of terminal restlessness. J Hospice Palliative Nurs, 7, 73-81
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• management of terminal restlessness, experienced by 25% to 85% of patients during the hours or days before death

Brown DJF (1999) The problem of weakness in patients with advanced cancer. Int J Palliative Nurs, 5, 1, 6-12
• distinguishes weakness and fatigue; types of weakness; management of weakness

Bruera E (2000) The frequency and correlates of dyspnea in patients with advanced cancer. J Pain Symp Man, 19, 357-62

Burt J, Shipman C, Richardson J (2010) The experiences of older adults in the community dying from cancer and non-cancer causes. Age & Ageing, 39, 1, 86-91
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• a greater proportion of people dying from non-cancer causes experience breathlessness compared to those dying from cancer (74% vs 65%)

Cepeda MS (2010) Dose patterns in commercially insured subjects chronically exposed to opioids. BMC Palliative Care, 9:14
www.biomedcentral.com/1472-684X/9/14
• dose escalation is uncommon in people with intermittent exposure to opioids.
• for people with cancer, continuous exposure requires doses to rise with time.
• for those without cancer, continuous exposure doses remain stable for the first 2 years of use, but subsequently increase

Chatterton (1988) Physiotherapy for the terminally ill. Physiotherapy, 74, 42-6.

Clark D (2002) Between hope and acceptance: the medicalisation of dying. Br Med J, 324, 905-7

Craig (1994) On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far? J Med Ethics, 20, 139-43.

Corner J (1996) Non-pharmacological intervention for breathlessness in lung cancer. Palliative Med, 10, 299-305

Corner J (1996) Developing a nursing approach to managing dyspnoea in lung cancer. Int J Palliative Nurs, 1, 1, 5-11

Cowcher K, Hanks, GW (1990) Long-term management of respiratory symptoms in advanced cancer. J Pain Symptom Manag, 5, 5, 320-30
• management of SOB, cough and haemoptysis
• chronic opioid use → tolerance to respiratory depression over some months.

Craig (1994) On withholding nutrition and hydration in the terminally ill. J Med Ethics, 20, 139-43

Curtis JR (2000) Communicating with patients and their families about advance care planning and end-of-life care. Respir Care, 45, 1385-98

Davis CL (1997) ABC of palliative care. Breathlessness, cough, and other respiratory problems. Br Med J, 315, 7113, 931-4
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Dudgeon DJ (2001) Physiological changes and clinical correlations of dyspnea in cancer outpatients. J Pain Symptom Management, 21, 5, 376-9

Ellershaw JE, Sutcliffe JM, Saunders CM (1995). Dehydration and the dying patient. J Pain Symptom Manage, 10, 192–7.
• patients with late-stage malignancy show no relationship between level of hydration and symptoms (dry mouth and thirst) so artificial hydration is probably unnecessary.

Emanuel EJ, Fairclough DL, Emanuel LL (2000) Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. J Am Med Ass, 284, 2460-8.
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• of patients who desire euthanasia, 50% change their minds, and a greater proportion do so if they have had depressive symptoms

Escarrabill J (2009) Discharge planning and home care for end-stage COPD patients. Eur Respir J, 34, 2, 507-512
cel.isiknowledge.com/full_record.do?product=CEL&colname=CEL&search_mode=CitingArticles&qid=4&SID=T2M6aAjdI4OLh9CJjfm&page=1&doc=7
• model of hospital-at-home
• hospital stay itself conveys a risk to patients

Evans R, Stone D, Elwyn G (2003) Organising palliative care for rural populations: a systematic review of the evidence. Fam Pract, 20, 304 – 310
fampra.oxfordjournals.org/cgi/content/full/20/3/304?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=1&andorexacttitle=and&andorexacttitleabs=and&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&volume=20&firstpage=304&resourcetype=HWCIT

Gray (1989) The role of physiotherapy in hospice care. Physiotherapy Practice, 5, 9-16

Gibbins J et L (2010) Sleep disturbances in patients with advanced cancer and their carers. Palliat Med, 24, 2, 205-6
• sleep fragmentation may be reversible by management of factors such as pain and anxiety

Gillon S, Johnson M, Campbell C (2010) Review of phenobarbitone use for deep terminal sedation in a UK hospice. Palliat Med, 24, 1, 100-2

Haas (1994) In the patient's best interests? - dehydration in dying patients. Prof Nurse, 10, 82-7

Haig S (2010) There’s no place like home; the rapid discharge of dying patients from hospital. Palliat Med, 24, 2, 206
• process of identifying preferred place for patients to die and means of facilitating this

Halifax J (2011) The precious necessity of compassion. J Pain Symptom Manage, 41, 1,
146-153

Hansen-Flaschen J (2004) COPD: the last year of life. Respir Care, 49, 1, 90-7
• difficulty of uncertain prognosis, the case for hospice care, how to communicate with patients

Hansen-Flaschen J (2004) Chronic obstructive pulmonary disease: the last year of life. Resp Care, 49, 90-7

Harrington J et al (2010) Advance care planning discussions in advanced cancer. Palliat Med, 24, 2, 209-10
• variation in when, and if, patients want to engage in advance care discussions

Hawryluck LA, Harvey WRC, Lemieux-Charles L, Singer PA (2002) Consensus guidelines on analgesia and sedation in dying intensive care unit patients. BMC Medical Ethics, 3, 3. www.biomedcentral.com/1472-6939/3/3

Hernandez-Reif M (2004) Breast cancer patients have improved immune and neuroendocrine functions following massage therapy. J Psychosom Res, 57, 45-52
www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T8V-4CWYRRD-8&_coverDate=07%2F31%2F2004&_alid=327967960&_rdoc=1&_fmt=&_orig=search&_qd=1&_cdi=5096&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=63417dba95f9bf55509b3f605dd73a67
• massage can reduce anxiety and depression in some cancer patients

Higginson IJ, Donaldson N (2004) Relationship between three palliative care outcome scales
Health Qual Life Outcome, 2, 68
www.hqlo.com/content/2/1/68/abstract

Hoeller U (2004) A patient questionnaire for radiation-induced brachial plexopathy. Am J Clin Onc, 27, 1-7
• hand and arm dysfunction may appear years after radiation

Jacobs LG (2003) Managing respiratory symptoms at the end of life. Clin Geriatr Med, 19, 225-39

Janssen DJA, Spruit MA, Does JD (2010) End-of-life care in a COPD patient awaiting lung transplantation. BMC Palliative Care, 9, 6
www.biomedcentral.com/content/pdf/1472-684X-9-6.pdf

Jennings AL, Davies AN, Higgins JP. (2002) A systematic review of the use of opioids in the management of dyspnoea. Thorax, 57, 11, 939-44

Kring D (2006) An exploration of the good death. Adv Nursing Science. 29, 3, E12-E24.
www.advancesinnursingscience.com/pt/re/ans/abstract.00012272-200607000-00011.htm;jsessionid=JMvhW8wQjPvQvN18qKqzgn4pksc7rhT1DTDQbP11NpyxFHPCBf8m!315956908!181195629!8091!-1
• a ‘good death’ includes making adequate preparations, experiencing no unpleasant symptoms, having someone by one's side, and being spiritually whole

Lautrette A (2007) A communication strategy and brochure for relatives of patients dying in the ICU. New Eng J Med, 356, 469-78
• providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication may lessen the burden of bereavement.

Malik F et al (2010) Living with breathlessness: the experience of caregivers of patients with lung cancer or heart failure. Palliat Med, 24, 2, 206

Marcant D (1993) Role of the physiotherapist in palliative care. J Pain Symp Man, 8, 68-71

Mazzarine-Willett A (2010) Deathbed phenomena: its role in peaceful death and terminal restlessness. Am J Hospice Palliat Med, 27, 2, 127-33

McLean S (2010) Primary thromboprophylaxis in the palliative care setting. Palliat Med, 24, 2, 213-14
• symptomatic DVT occurs in 15% of patients with advanced malignancy

McKinley RK (2004) Care of people dying with malignant and cardiorespiratory disease in general practice. Br J Gen Practice, 54, 909-13
www.ncbi.nlm.nih.gov/pmc/articles/PMC1326108/
• people dying from cardiorespiratory disease are less likely to receive palliative care than people with malignant disease, and more likely to have untreated symptoms

Muller-Busch HC (2003) Sedation in palliative care. BMC Palliative Care, 2, 2.
• discussion of ‘terminal sedation’ and ‘conscious sedation’

Navigante A, Cerchietti L (2006) Midazolam as adjunct therapy to morphine in the alleviation of severe dyspnea perception in patients with advanced cancer. J Pain Symptom Manage, 31, 38–47
www.sciencedirect.com.ezproxy.brighton.ac.uk/science?_ob=MiamiImageURL&_imagekey=B6T8R-4J444FC-9-C&_cdi=5093&_user=128558&_pii=S0885392405005634&_check=y&_origin=search&_coverDate=01%2F31%2F2006&view=c&wchp=dGLbVzb-zSkzk&md5=c5d46141aa46f71b9b57d4f7818e36e2&ie=/sdarticle.pdf
• SOB is the main symptom for more than 20% of patients in the last 48 hours of life
• beneficial effects of sedatives in controlling breathlessness [so long as anxiety-management has preceded this]

Ngaage DL (2004) The functional impact of an individualized, graded, outpatient pulmonary rehabilitation in end-stage COPD. Heart Lung, 33, 6, 381-9
• pulmonary rehab in end-stage COPD can improve spirometry and exercise tolerance
Patrick D, Engelberg RA, Curtis JR (2001) Evaluating the quality of dying and death. J Pain Symptom Management, 22, 717-26
www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T8R-43VJ7V5-2&_user=10&_handle=V-WA-A-W-AU-MsSWYWW-UUA-U-AAADDEDZBB-AAACBDYVBB-EWUVUCAV-AU-U&_fmt=summary&_coverDate=09%2F30%2F2001&_rdoc=2&_orig=browse&_srch=%23toc%235093%232001%23999779996%23262743!&_cdi=5093&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=87b7758f6772f67af0a656ad2314a849
• patients’ needs - control of symptoms, autonomy, control of breathing, feeding, bladder and bowels

Payne A et al (2007) Sensitivity and specificity of a two-question screening tool for depression in a specialist palliative care unit. Palliat Med, 21, 193-8
• Two questions to identify depression in in-patient palliative care patients

Pease NJ, Harris RJ, Finlay IG (2004). Development and audit of a care pathway for the management of patients with suspected malignant spinal cord compression. Physiother, 90, 27-34
• care pathway to limit lying supine
- using collars and braces if required
- monitoring spinal stability by pain, neurological signs and scans

Philip J, Gold M, Milner A (2006) A randomized, double-blind, crossover trial of the effect of oxygen on dyspnea in patients with advanced cancer. J Pain Symptom Management, 32, 6, 541-50
www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=17157756&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
• oxygen and air ease breathlessness equally, including in patients with hypoxaemia

Philip J, Gold M, Schwarz M, Komesaroff M (2007) Anger in palliative care: a clinical approach. Internal Med J, 37, 1, 49–55
www.blackwell-synergy.com/doi/full/10.1111/j.1445-5994.2006.01236.x
• practical approach to managing the anger that some people feel as a reaction to significant illness and loss

Porter LS (2011) Caregiver-assisted coping skills training for lung cancer. J Pain Symptom Manage, 41, 1, 1-13
• benefits of telephone support.

Purtilo (1976) Similarities in patient response to chronic and terminal illness. Phys.Ther, 56, 279-84

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jama.ama-assn.org/cgi/content/abstract/284/19/2502

Radbruch L (2008) Fatigue in palliative care patients. Palliat Med, 22, 13-32
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• diagnosis and treatment of fatigue in COPD, heart failure and cancer

Reuben (1986) Dyspnea in terminally cancer patients. Chest, 89, 234-6.

Richardson A, Ream E (1998) Recent progress in understanding cancer-related fatigue. Int J Palliative Nurs, 4, 4, 1998
• highest incidence of fatigue is found in patients receiving radiotherapy to the chest

Rocker GM, Sinuff T, Horton R (2007) Advanced chronic obstructive pulmonary disease: innovative approaches to palliation. J Palliat Med, 10, 3, 783-97
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• by the end of 2020, COPD will be the third leading cause of death globally

Russi EW (2002) Lung cancer – a common and deadly disease. Respiration, 69, 199-200

Schirm V (2005) Conversations about choices for end-of-life care: knowing and understanding preferences. Hosp Palliative Nurs, 7, 91-7
www.nursingcenter.com/library/JournalArticle.asp?Article_ID=576296

Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning. BMC Palliative Care 2010, 9:4
www.biomedcentral.com/1472-684X/9/4

Schaefer I (2010) The influence of DNR order on transition to palliative care. Palliat Med, 24, 2, 211-12
• patients without a DNR order should not be excluded from palliative care

Srivastava R (2011) The art of medicine: critical conversations: navigating between hope and truth. Lancet, 378, 979

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• patient’s needs - control of symptoms, good communication, preparation for death, and the opportunity to achieve a sense of completion

Steinhauser KE (2002) Preparing for the end of life. J Pain Symptom Management, 22, 727-737
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• patients’ needs - knowing what to expect, having treatment preferences in writing, knowing their health workers are comfortable talking about death and dying

Sutcliffe J (1994) Dehydration: burden or benefit to the dying patient? J Adv Nurs, 19, 71-6

Taylor BR, McCann RM (2005) Controlled sedation for physical and existential suffering? J Pall Med, 8, 144-147
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• addressing the root cause of existential suffering may be preferable to heavy sedation, followed by strategies such as spiritual support, friendship or psychotherapy

Udezue E (2001) Lidocaine inhalation for cough suppression. Am J Emerg Med, 19, 3, 206-7

Uronis HE, Currow DC, McCrory DC, et al (2008) Oxygen for relief of dyspnoea in mildly- or non-hypoxaemic patients with cancer: a systematic review and meta-analysis. Br J Cancer, 98, 2, 294–9
• there is no evidence for oxygen relieving SOB at the end of life.

Vitacca M, Grassi L, Barbano G (2009) Last 3 months of life in home-ventilated patients. Eur Respir J, 35: 1064-71
erj.ersjournals.com/cgi/content/abstract/09031936.00061009v1

Waller A, Girgis A, Johnson C (2010) Facilitating needs based cancer care for people with a chronic disease. BMC Palliative Care, 9:2
www.biomedcentral.com/1472-684X/9/2

Walsh (1993) Dyspnoea in advanced cancer. Lancet, 342, 450-51.

Windisch W (2010) Home mechanical ventilation: who cares about how patients die?
Eur Respir J, 35(5): 955-7
erj.ersjournals.com/cgi/content/full/35/5/955

Yildirim E (2005) Rapid pleurodesis in symptomatic malignant pleural effusion. Eur J Cardio-Thorac Surg, 27, 19-22
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• shorter hospital stay resulting in superior cost-effectiveness and palliation

Yoo HJ, Ahn SH, Kim SB (2005) Efficacy of progressive muscle relaxation training and guided imagery in reducing chemotherapy side effects in patients with breast cancer and in improving their quality of life. Supportive Care in Cancer, 13, 19, 826-33
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Zhang AY (2010) Differential patient–caregiver opinions of treatment and care for advanced lung cancer patients. Soc Sci Med, 70, 8, 1155-8
• family disagreement is associated with depression in both patients and caregivers


DNR = do not resuscitate
GMC = General Medical Council
ICU = intensive care unit
SOB = shortness of breath