Relief of respiratory symptoms at the end of life.
Palliative Care Competence Framework
www.hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/Resources/Physiotherapy.pdf

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/

Guidelines for the Rehabilitation of Patients with Metastatic Spinal Cord Compression
www.gain-ni.org/images/GAIN-Guidelines-for-Rehabilitation-of-Assessment-and-Care-Provision-by-Occupational-Therapists-and-Physiotherapists-in-the-Acute-Sector.PDF


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
www.chestjournal.org/cgi/content/full/121/1/220?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=Abrahm+JL+&andorexactfulltext=and&searchid=1125819478152_450&stored_search=&FIRSTINDEX=0&sortspec=relevance&volume=121&firstpage=220&resourcetype=1&journalcode=chest
• 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

Ackermann RJ (2016) Care of patients at the end of life: advance care planning. FP Essent; 447:25-31
• in people with dementia artificial nutrition and hydration does not prolong survival, increase comfort or improve quality of life

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

Arcuri JF, Abarshi E, Preston NJ et al (2016) Benefits of interventions for respiratory secretion management in adult palliative care patients—a systematic review. BMC Palliative Care; 15:74. doi:10.1186/s12904-016-0147-y.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4979117/

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

Baralatei FT (2016) Care of patients at the end of life: management of nonpain symptoms. FP Essent; 447:18-24

Barawid EL (2013) Rehabilitation modalities in palliative care. Crit Rev Phys Rehab Med, 25(1-2): 77-100. doi: 10.1615/CritRevPhysRehabilMed.2013007810

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

Barnato AE (2017) Storytelling in the early bereavement period to reduce emotional distress among surrogates involved in a decision to limit life support in the ICU: a pilot feasibility trial. Crit Care Med; 45(1):35-46

Baxter SK, Baird WO, Thompson S et al (2013) Use of non-invasive ventilation at end of life. Palliat Med; 27(9):878

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

Bialon LN, Coke S (2012) A study on caregiver burden: stressors, challenges, and possible solutions. Am J Hospice Palliat Med, 29, 210-218

Billings JA (2012) Humane terminal extubation reconsidered: the role for preemptive analgesia and sedation. Crit Care Med, 40, 2, 625–30

Blanchette H (2005) Assessment and treatment of terminal restlessness in the hospitalized adult patient with cancer. Med Surg Nurs, 14, 1, 17-22
www.ncbi.nlm.nih.gov/pubmed/15779736
• 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
journals.lww.com/jhpn/Abstract/2005/03000/Helping_the_Family_Through_the_Experience_of.10.aspx
• management of terminal restlessness, experienced by 25% to 85% of patients during the hours or days before death

Brenn T, Ytterstad E (2016) Increased risk of death immediately after losing a spouse: cause-specific mortality following widowhood in Norway. Prev Med; 89:251-6. doi: 10.1016/j.ypmed.2016.06.019

Brown-Saltzman K, Upadhya D, Larner L et al (2010) An intervention to improve respiratory therapists' comfort with end-of-life care. Respir Care, 55, 7, 858-65

Campbell ML, Yarandi HN 2013) Death rattle is not associated with patient respiratory distress: is pharmacologic treatment indicated? J Palliat Med; 16(10):1255-1259

Carlucci A, Vitacca M, Malovini A et al (2016) End-of-life discussion, patient understanding and determinants of preferences in very severe COPD patients: a multicentric study. COPD; 13(5):1-7. doi: 10.3109/15412555.2016.1154034

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

Cohen JV (2008) Lessons learned as a third-year medical student on a rotation in palliative medicine. J Palliat Med, 11, 5, 781-2

Curtis JR (2005) Interventions to improve care during withdrawal of life-sustaining treatments. J Palliat Med, 8, suppl.1, S116-118

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

Dudgeon DJ (2001) Physiological changes and clinical correlations of dyspnea in cancer outpatients. J Pain Symptom Management, 21, 5, 376-9

EAPC (2016) Fatigue in palliative care patients. European Association for Palliative Care
www.eapcnet.eu/Themes/Clinical/Publicationsdocuments/EAPCRecommendations/tabid/1499/ctl/Details/ArticleID/113/mid/2812/Fatigue-in-palliative-care-patients-an-EAPC-approach.aspx

Ernecoff NC, Cox CE (2017) Spirituality, palliative care, and the intensive care unit. a new approach. Am J Respir Crit Care Med; 195(2):150 –152

Fardy HJ (2016) Oxygen therapy in palliative care. NPJ Prim Care Respir Med; 26:15073. doi: 10.1038/npjpcrm.2015.73

Filbet, M. 2017. Barriers to venipuncture-induced pain prevention in cancer patients: a qualitative study. BMC Palliative Care. 16:5
• anaesthetic patches should be used for venepuncture

Gerber LH (2017) Cancer-related fatigue: persistent, pervasive, and problematic. Phys Med Rehab Clin; 28(1):65–88

Gerritsen RT et al (2013) Perception by family members and ICU staff of the quality of dying and death in the ICU: a prospective multicenter study in the Netherlands. Chest, 143, 2, 357-363. doi: 10.1378/chest.12-0569

Giardini A, Ferrari P, Negri EM et al (2016) The positive role of caregivers in terminal cancer patients’ abilities: usefulness of the ICF framework. Europ J Phys Rehab Med; 52(2): 214-22
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

Goebel, S., Mai., S.S., Gerlach, F., et al. 2017. Family members of deceased palliative care patients receiving bereavement anniversary cards: a survey on the recipient’s reactions and opinions. BMC Palliative Care. 16:26
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-017-0199-7

Guo, Q., Cann, B., 2017. Keep in Touch (KIT): feasibility of using internet-based communication and information technology in palliative care. BMC Palliative Care. 16:29

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

Henson LA, Gomes B, Koffman J et al (2016) Factors associated with aggressive end of life cancer care. Supportive Care Cancer; 24:1079-1089. doi: 10.1007/s00520-015-2885-4
www.ncbi.nlm.nih.gov/pmc/articles/PMC4729799/

Hernandez SL, Fasnacht KS, Sheyner I et al (2015) Treatment of refractory hiccups with amantadine. J Pain Palliat Care Pharmacother; 29(4):374-7. doi: 10.3109/15360288.2015.1101640
• relief of hiccups without sedation

Horton R, Rocker G, Dale A et al (2013) Implementing a palliative care trial in advanced COPD: a feasibility assessment (the COPD IMPACT study) . J Palliat Med, 16, 11, 67-73. doi:10.1089/jpm.2012.0285
online.liebertpub.com/doi/abs/10.1089/jpm.2012.0285

Jacobe S (2015) Diagnosing death. J Paed Child Health; (51)6: 573–576. doi: 10.1111/jpc.12889

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

Javadzadeh S, Chowienczyk S, Booth S et al (2016) Comparison of respiratory health-related quality of life in patients with intractable breathlessness due to advanced cancer or advanced COPD. BMJ Support Palliat Care. 2016 Mar;6(1):105-8. doi: 10.1136/bmjspcare-2015-000949
• patients with breathlessness due to advanced COPD have worse respiratory HRQoL than those with advanced cancer
• greater access to palliative care is needed in advanced COPD

Johnson MJ (2012) Gaps in the evidence base of opioids for refractory breathlessness. a future work plan? J Pain Symptom Management, 43, 3, 614-624

Kawabata M, Kaneishi K (2012) Continuous subcutaneous infusion of compound oxycodone for the relief of dyspnea in terminally ill cancer patients: a retrospective study. Am J Hosp Palliat Care. Jun 5
www.ncbi.nlm.nih.gov/pubmed/22669937

Kilgour RD, Vigano A, Trutschnigg B et al (2016) Handgrip strength predicts survival and is associated with markers of clinical and functional outcomes in advanced cancer patients.
Support Care Cancer; 21(12):3261-70. doi: 10.1007/s00520-013-1894-4

Landers A, Wiseman R, Pitama S et al (2016) Patient perceptions of severe COPD and transitions towards death: a qualitative study identifying milestones and developing key opportunities. NPJ Primary Care Respir Med; 25:15043. doi: 10.1038/npjpcrm.2015.43.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4497313/

Lau CHY, Wu X, Chung VCH et al (2016) Acupuncture and related therapies for symptom management in palliative cancer care. Dufrane. D, ed. Med; 95(9):e2901. doi: 10.1097/MD.0000000000002901.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4782866/

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.

Lawrence M, Repede E (2013) The incidence of deathbed communications and their impact on the dying process. Am J Hospice Palliat Med; 30(7):632-639

Lilly EJ (2016) Palliative care in chronic obstructive pulmonary disease. J Crit Care; 35:150-4. doi: 10.1016/j.jcrc.2016.05.019

Lyngaa T, Christiansen C, Nielsen H et al (2015) Intensive care at the end of life in patients dying due to non-cancer chronic diseases versus cancer: a nationwide study in Denmark. Crit Care; 19:413
ccforum.biomedcentral.com/articles/10.1186/s13054-015-1124-1

Maggiorelli C, Ciarleglio G, Granese V et al (2015) Integrated therapeutic strategy during noninvasive ventilation in a patient with end-stage respiratory disease. Respir Care; 60(4):e80-5

Malcolm, L., Mein, G., Jones, J., et al. 2017. Strength in numbers: patient experiences of group exercise within hospice palliative care. BMC Palliative Care. 15:97

Martin RS, Hayes B, Gregorevic K et al (2016) The effects of advance care planning interventions on nursing home residents: a systematic review. J Am Med Dir Assoc; 17(4):284-93. doi: 10.1016/j.jamda.2015.12.017

Matsunuma R, Takato H, Takeda Y et al (2016) Patients with end-stage interstitial lung disease may have more problems with dyspnea than end-stage lung cancer patients. Indian J Palliat Care; 22(3):282-287. doi: 10.4103/0973-1075.185035.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973488/

Mitchell G, Agnelli J, McGreevy J et al (2016) Palliative and end-of-life care for people living with dementia in care homes: part 1. Nurs Stand; 30(43):54-63. doi: 10.7748/ns.2016.e10099

Mitchell G, Agnelli J, McGreevy J et al (2016) Palliative and end-of-life care for people living with dementia in care homes: part 2. Nurs Stand; 30(44):54-63. doi: 10.7748/ns.2016.e10582

Miyashita, M., Aoyama, M., Nakahata, M., et al. 2017 Development the Care Evaluation Scale Version 2.0: a modified version of a measure for bereaved family members to evaluate the structure and process of palliative care for cancer patient. BMC Palliative Care. 16:8. doi: 10.1186/s12904-017-0183-2

Morgan DD, White KM (2012) Occupational therapy interventions for breathlessness at the end of life. Curr Opin Support Palliat Care, 6(2):138-43. doi: 10.1097/SPC.0b013e3283537d0e.

Nava S, Ferrer M, Esquinas A et al (2016) Palliative use of non-invasive ventilation in end-of-life patients with solid tumours: a randomised feasibility trial. Lancet Oncol; 14(3):219-27. doi: 10.1016/S1470-2045(13)70009-3
• NIV is more effective than oxygen in reducing SOB and decreasing doses of morphine needed in patients with end-stage cancer

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

Orellana-Rios, C.L., Radbruch, L., Kern, M., et al. 2017. Mindfulness and compassion-oriented practices at work reduce distress and enhance self-care of palliative care teams: a mixed-method evaluation of an “on the job“ program. BMC Palliative Care. 17, 3

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

Radbruch L (2008) Fatigue in palliative care patients. Palliat Med, 22, 13-32
eapcnet.eu/LinkClick.aspx?fileticket=afqAmAG2huI%3d&tabid=197
• diagnosis and treatment of fatigue in COPD, heart failure and cancer

Raj VS, Silver JK, Pugh TM et al (2017) Palliative care and physiatry in the oncology care spectrum: an opportunity for distinct and collaborative approaches. Phys Med Rehab Clin; 28(1):35–47

Rajala K, Lehto JT, Saarinen M et al (2016) End-of-life care of patients with idiopathic pulmonary fibrosis. BMC Palliat Care; 15:85. doi: 10.1186/s12904-016-0158-8
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059981/
• the majority of people with idiopathic pulmonary fibrosis die in hospital with ongoing life-prolonging procedures until death

Read S (2013) Palliative care for people with intellectual disabilities: pitfalls and potential. Palliat Med, 27, 1, 3-4. doi: 10.1177/0269216312470238

Reinke LF, Uman J, Udris EM et al (2013) Preferences for death and dying among veterans with chronic obstructive pulmonary disease. Am J Hospice Palliat Med; 30(8):768-772. doi:10.1177/1049909112471579

Rocker GM, Simpson AC, Horton R (2015) Palliative care in advanced lung disease: the challenge of integrating palliation into everyday care. Chest; 148(3):801-9. doi: 10.1378/chest.14-2593
• The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic lung disease

Roy DJ (2012) Wisdom in palliative care? J Palliat Care, 28, 2, 67-8

Rush B, Hertz P, Bond A et al (2017) Use of palliative care in patients with end-stage copd and receiving home oxygen: national trends and barriers to care in the United States. Chest; 151(1):41-46. doi:10.1016/j.chest.2016.06.023.

Schmitz A, Schulz C, Friebel U et al (2016) Patient-controlled therapy of breathlessness in palliative care: a new therapeutic concept for opioid administration? J Pain Symptom Manage; 51(3):581-8. doi: 10.1016/j.jpainsymman.2015.10.015

Schonfeld DJ, Demaria T (2016) Supporting the grieving child and family. Pediatrics; 138(3). pii: e20162147. doi: 10.1542/peds.2016-2147

Schur S, Weixler D, Gabl C et al (2016) Sedation at the end of life - a nation-wide study in palliative care units in Austria. BMC Palliat Care; 15(1):50. doi: 10.1186/s12904-016-0121-8
www.ncbi.nlm.nih.gov/pmc/articles/PMC4868021/

Singer AE, Meeker D, Teno JM et al (2016) Factors associated with family reports of pain, dyspnea, and depression in the last year of life. J Palliat Med;19(10):1066-1073

Smith AK et al (2013) Disability during the last two years of life. JAMA Int Med; 173(16):1506-13

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

Tan, L., 2017. Advance Care Planning. Am J Hospice Palliat Med. 34(1): 26–33

Tapley M, Talbot C, Jolley D (2012) The importance of awareness of cognitive impairment in palliative care patients. BMC Palliat Care, 11, 58-61

Taylor J et al (2014) Potential and Possibility: Rehabilitation at End of Life, Elsevier

Taylor BR, McCann RM (2005) Controlled sedation for physical and existential suffering? J Pall Med, 8, 144-147
www.liebertonline.com/doi/abs/10.1089/jpm.2005.8.144?cookieSet=1
• addressing the root cause of existential suffering may be preferable to heavy sedation, followed by strategies such as spiritual support, friendship or psychotherapy

Truesdale K (2013) Nebulized lidocaine in the treatment of intractable cough. Am J Hospice Palliat Med; 30(6):587-589

Twomey S, Dowling M (2013) Management of death rattle at end of life. Br J Nurs.; 13;22(2):81-5

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

Ullrich, A., Asgherfeld., L, Marx, G., et al. 2017. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliative Care. 16:31

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.

Van der Steen, J.T., Dekker, N.L., Gijsberts, M-J.H.E., et al. 2017. Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development. BMC Palliative Care. 16:28

Velarde-Garcia JF, Pulido-Mendoza R, Moro-Tejedor MN et al (2016) Nursing and end-of-life care in the intensive care unit: a qualitative systematic review. J Hospice Palliative Nurs; 18(2):115-123

Vicent, L., Olarte, J.M.N., Puente, L., 2017. Degree of dyspnoea at admission and discharge in patients with heart failure and respiratory diseases. BMC Palliative Care. 16:35

Vitacca M, Comini L (2012) How do patients die in a rehabilitative unit dedicated to advanced respiratory diseases? Multidisciplinary Respiratory Medicine, 7, 18.
www.mrmjournal.com/content/7/1/18

Waller, A., Dodd, N., Tattersall, H.N., et al. 2017. Improving hospital-based end of life care processes and outcomes: a systematic review of research output, quality and effectiveness. BMC Palliative Care. 16, 34

Weathers E, O'Caoimh R, Cornally N et al (2016) Advance care planning: a systematic review of randomised controlled trials conducted with older adults. Maturitas; 91:101-9. doi: 10.1016/j.maturitas.2016.06.016

Wildiers H (2002) Death rattle: prevalence, prevention and treatment. J Pain Symptom Management, 23, 310-17

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

Wong, S.L., Leong, S.M., Chan, C.M., et al 2017. The effect of using an electric fan on dyspnea in Chinese patients with terminal cancer. Am. J. Hospice. Palliat. Med. 34(1),42-46

Ziehm J, Farin E, Schäfer J et al (2016) Palliative care for patients with heart failure: facilitators and barriers - a cross sectional survey of German health care professionals. BMC Health Services Res; 16:361. doi: 10.1186/s12913-016-1609-x.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4977661/


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


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