palliative care
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Introduction
Interdisciplinary care (medicine, nursing, social work, chaplaincy, & other specialties when appropriate) that focuses on improving quality of life for persons of any age who are living with any serious illness & for their families.[18]
Palliative care addresses pain, suffering & quality of life across all stages of treatment.
It does not exclude life-prolonging treatment & rehabilitation.[5]
Community-based palliative care specialist teams in patients' homes is associated with lower likelihood of hospitalization & emergency department visits during the last weeks of life[17]
Dimensions of quality care at the end of life
- self determination
- symptom management
- pain
- depression
- anxiety[4]
- delirium
- multidimensional quality of life
- physical
- emotional
- social
- spiritual
- family well-being
- circumstances surrounding death - setting, treatment
- resource use/costs
Goals of medicine
- curing disease/prolonging life
- restoration/preservation of function
- relieving suffering
Indications
- end of life
- palliative intervention in advanced cancer[25][26]
- beneficial for lung cancer & colorectal cancer
- no benefit for pancreatic cancer, gastric cancer, esophageal cancer, hepatobiliary cancer
- patients with organ failure experience similar benefits from palliative care as do cancer patients [36, 45]
Management
First step:
- establish goals of care
- patient-centered, open format
- elicit bucket list & use as starting point to initiate goals of care discussion & as strategy for personalized care plan[33]
Compliance with issues of medical ethics.
- autonomy
- beneficence
- acting in the patient's best interest
- non-malificence, i.e. doing no harm
- justice: treat similar patients similarly
- veracity: always tell the truth, especially in prognosis
Goals of medicine often conflict
- chance to live longer vs a less optimal dying process
- states worse than death where death would be welcome
- the meaning of a natural life span & allocation of resources
- 30 % of Medicare dollars spent in final year of life
Delivering end of life care requires a combination of 3 things
- a framework for ethical decision making
- technical competence
- systems of care that facilitate coordination of care across goals & venues
Elements of a good death:
- pain/symptom management
- avoiding unnecessary prolongation of dying
- preparation for death
- clear decision making
- acheiving a sense of control
- a sense of completion in life
- affirmation of the whole person
- strengthening relationships with loved ones
- contributing to others
- relieving burden on loved ones
End of life decisions
- self determination
- decision-making capacity
- standards for decision-making in patients lacking capacity
- ethical hierarchy
- advance directives
- substituted judgment
- best interest determined by proxy
- in most states, physicians turn to family members when no proxy has been appointed
- physicians should not turn to family members for decision making if patient has capacity, unless asked by the patient to do so
- concordance of patients preferences & family member's knowledge of those preferences is not high, but is higher than concordance between that of patients & their physicians
- unrelated friends
- may be ethically appropriate decision makers
- state law may require advance directives of court appointment as the patient's guardian
- court appointment of a guardian should be sought in any incompetent patient without an appropriate surrogate decision maker
- ethical hierarchy
- situations where the patient preferences should be made explicit
- treatment decision making
- when a reasonable person might prioritize goals other than maximizing survival duration as the primary goal of care
- advance care planning - when the probability of mental capacity in the near future reaches some threshold value
- treatment decision making
- advance directives
Patient self determination Act of 1991 (PSDA)
Ethical considerations in treatment decisions
- no ethical difference between not starting treatment & stopping one that has been started
- all medical interventions are considered ethically (& legally) equivalent, including antibiotics, tube feeding, IV hydration, etc.
Do not resuscitate (DNR) orders
Special considerations in end of life decisions
- emergency privilege
- unusual treatment choices - in situations where a patient chooses a care plan that defies the physician's recommendations, the patient's wishes should be respected provided:
- the patient has decision-making capacity & has had the proper informed consent
- the patient's requested plan fits within the goals of medicine
A physician's prognosis is a central element of both patient & physician decision making, especially at the end of life.
- Foreseeing: physician's silent cognitive assessment
- Foretelling: what physician relays to patient & family
- Physician's prognoses are often wrong & usually optimistic
- Such errors may occur at both phases (foreseeing & foretelling)
- Thus, patients are often twice removed from the truth
Mismatch between preferences & prognosis: (See futility)
- patient preferences do not match reality 'futility'
- situations where the 'futility' is considered
- Futility situations are usually the result of suboptimal practice of clinical ethics
Families in end of life care:
- families are important stakeholders in end of life care
- decision makers
- caregivers
- those who must live on after a patient dies
- SUPPORT study revealed financial hardships of family
Care setting at the end of life
- great variability among patients in their desire to die at home vs in the hospital -> many patients don't care
- hospice care
End of life issues in long-term care
- decisions about the aggressiveness of care are best made early in the nursing home stay to insure that care will be consistent with the overall goals
- upon admission to the nursing home
- designation of surrogate decision makers
- specification of care goals
- completion of advance directives, if needed
- specification of limitations on aggressiveness of care including hospitalization or life-sustaining treatments
- such decisions are often made without the input of the patient, even when the patient has decisional capacity
- documentation of patient participation & preferences, if obtainable
Pain management in palliative care
- see chronic pain
- may overlap with depression
Low threshold for treatment of depression
- chronic pain may play a role
- choice of antidepressant differs at end-of-life
Treatment of dyspnea
- high-flow oxygen relieves dyspnea in palliative care patients[35]
- use of a fan to blow air across patient's face as an outpatient[37]
- evidence does not support use of opioids or other pharmaceuticals[38]
- end-of-life: low-dose opiate can relieve dyspnea[5][14]
- individualized management of delirium precipitants & supportive strategies result in shorter duration of distressing delirium symptoms than risperidone or haloperidol[29]
- workup of potentially reversible causes
Treatment of nausea in palliative care
- if due to constipation, bowel obstruction, ileus
- if due to chemotherapy, radiation, inflammation, cancer
- if due to drugs, metabolites, bacterial toxins
- if due to labyrinthine disorder, motion sickness
- anticholinergic agents: scopolamine, diphenhydraine, promethazine
- increased intracranial pressure: glucocorticoids
Pressure ulcer management in palliative care[15]
- reduce odor from deep pressure ulcers
- frequent cleansing
- topical metronidazole gel[14]
- treat pain from pressure ulcer
- also see pressure ulcer
Notes
- cancer patients felt better, survived longer, made fewer emergency department visits, & were more likely to die at home when palliative cancer was initiated early after a diagnosis of metastatic non-small-cell lung cancer[7]
- palliative care of benefit for metastatic lung cancer but not for metastatic pancreatic cancer, gastric cancer, esophageal cancer, or hepatobiliary cancer[30]
- early palliative care reduces chemotherapy use near the end of life, but does not decrease survival[8]
- advanced cancer patients reported better quality of life & patient satisfaction with palliative care[13]
- parenteral fluids did little to improve comfort[9], but frequent nursing visits were beneficial
- palliative care may improve symptoms & quality of life, but not survival[27]
- home-base palliative care associated with lower rates of hospitalization & emergency room visits near the end of life[28]
- patients with noncancer terminal conditions were more likely to receive palliative care at home & for a shorter time than cancer patients[39]
More general terms
Additional terms
- core elements of palliative care program
- hospice
- management of bowel obstruction without a tube
- management of nausea/vomiting by etiology
- medical ethics
- palliative care consultation
- palliative prognostic measure
References
- ↑ Rosenfeld K. In: Intensive Course in Geriatric Medicine & Board Review, Marina Del Ray, CA, Sept 12-15, 2001
- ↑ Frederich M., Multicampus Program in Geriatrics & Gerontology, Syllabus: The Cutting Edge in Palliative Medicine, 2001
- ↑ Rosenfeld K. In: Intensive Course in Geriatric Medicine & Board Review, Marina Del Ray, CA, Sept 25-28, 2002
- ↑ 4.0 4.1 Norton SA et al, Proactive palliative care in the medical intensive care unit: Effects of length of stay for selected high-risk patients. Crit Care Med 2007, 35:1530 PMID: https://www.ncbi.nlm.nih.gov/pubmed/17452930
Luce JM and White DB The pressure to withhold or withdraw life-sustaining therapy from critically ill patients in the United States. Am J Respir Crit Care Med 2007, 175:1104 PMID: https://www.ncbi.nlm.nih.gov/pubmed/17379853 - ↑ 5.0 5.1 5.2 Medical Knowledge Self Assessment Program (MKSAP) 14, 15, 16, 17, 18, 19. American College of Physicians, Philadelphia 2006, 2009, 2012, 2015, 2018, 2021.
Medical Knowledge Self Assessment Program (MKSAP) 19 Board Basics. An Enhancement to MKSAP19. American College of Physicians, Philadelphia 2022 - ↑ 6.0 6.1 Breitbart W, Strout D. Delirium in the terminally ill. Clin Geriatr Med. 2000 May;16(2):357-72. PMID: https://www.ncbi.nlm.nih.gov/pubmed/10783433
- ↑ 7.0 7.1 Temel JS et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010 Aug 19; 363:733 PMID: https://www.ncbi.nlm.nih.gov/pubmed/20818875
Kelley AS and Meier DE. Palliative care - A shifting paradigm. N Engl J Med 2010 Aug 19; 363:781. PMID: https://www.ncbi.nlm.nih.gov/pubmed/20818881 - ↑ 8.0 8.1 Greer JA et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol 2012 Feb 1; 30:394 PMID: https://www.ncbi.nlm.nih.gov/pubmed/22203758
- ↑ 9.0 9.1 Bruera E et al. Parenteral hydration in patients with advanced cancer: A multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 2013 Jan 1; 31:111. PMID: https://www.ncbi.nlm.nih.gov/pubmed/23169523
- ↑ Swetz KM, Kamal AH. In the clinic. Palliative care. Ann Intern Med. 2012 Feb 7;156(3) PMID: https://www.ncbi.nlm.nih.gov/pubmed/22312158
- ↑ Lorenz KA, Lynn J, Dy SM, Shugarman LR et al Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008 Jan 15;148(2):147-59. PMID: https://www.ncbi.nlm.nih.gov/pubmed/18195339
- ↑ Reville B, Axelrod D, Maury R. Palliative care for the cancer patient. Prim Care. 2009 Dec;36(4):781-810. PMID: https://www.ncbi.nlm.nih.gov/pubmed/19913186
- ↑ 13.0 13.1 Zimmermann C et al. Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial. Lancet 2014 Feb 19; <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/24559581 <Internet> http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2962416-2/fulltext
Block SD and Billings JA. A need for scalable outpatient palliative care interventions. Lancet 2014 Feb 19 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/24559580 <Internet> http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2962676-8/fulltext - ↑ 14.0 14.1 14.2 Geriatric Review Syllabus, 8th edition (GRS8) Durso SC and Sullivan GN (eds) American Geriatrics Society, 2013
Geriatric Review Syllabus, 9th edition (GRS9) Medinal-Walpole A, Pacala JT, Porter JF (eds) American Geriatrics Society, 2016 - ↑ 15.0 15.1 Langemo DK, Black J; National Pressure Ulcer Advisory Panel. Pressure ulcers in individuals receiving palliative care: a National Pressure Ulcer Advisory Panel white paper. Adv Skin Wound Care. 2010 Feb;23(2):59-72. PMID: https://www.ncbi.nlm.nih.gov/pubmed/20087072
- ↑ Von Roenn JH, Temel J. The integration of palliative care and oncology: the evidence. Oncology (Williston Park). 2011 Nov 30;25(13):1258-60, 1262, 1264-5. PMID: https://www.ncbi.nlm.nih.gov/pubmed/22272492
- ↑ 17.0 17.1 Seow H et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: A pooled analysis. BMJ 2014 Jun 6; 348:g3496 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/24906901 <Internet> http://www.bmj.com/content/348/bmj.g3496
- ↑ 18.0 18.1 Kelley AS, Morrison RS Palliative Care for the Seriously Ill N Engl J Med 2015; 373:747-755. August 20, 2015 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/26287850 <Internet> http://www.nejm.org/doi/full/10.1056/NEJMra1404684
- ↑ Proulx K, Jacelon C Dying with dignity: the good patient versus the good death. Am J Hosp Palliat Care. 2004 Mar-Apr;21(2):116-20 PMID: https://www.ncbi.nlm.nih.gov/pubmed/15055511
- ↑ Kvale PA1, Selecky PA, Prakash UB for the American College of Chest Physicians. Palliative care in lung cancer: ACCP evidence-based clinical practice guidelines (2nd edition). Chest. 2007 Sep;132(3 Suppl):368S-403S. PMID: https://www.ncbi.nlm.nih.gov/pubmed/17873181
- ↑ Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. J Palliat Med. 2011 Jan;14(1):17-23. PMID: https://www.ncbi.nlm.nih.gov/pubmed/21133809
- ↑ Evans WG, Tulsky JA, Back AL, Arnold RM. Communication at times of transitions: how to help patients cope with loss and re-define hope. Cancer J. 2006 Sep-Oct;12(5):417-24. Review. PMID: https://www.ncbi.nlm.nih.gov/pubmed/17034677
- ↑ Strand JJ, Kamdar MM, Carey EC. Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clin Proc. 2013 Aug;88(8):859-65. Review. PMID: https://www.ncbi.nlm.nih.gov/pubmed/23910412
- ↑ Rosenberg M, Lamba S, Misra S. Palliative medicine and geriatric emergency care: challenges, opportunities, and basic principles. Clin Geriatr Med. 2013 Feb;29(1):1-29. Review. PMID: https://www.ncbi.nlm.nih.gov/pubmed/23177598
- ↑ 25.0 25.1 Bakitas M, Lyons KD, Hegel MT et al Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009 Aug 19;302(7):741-9 PMID: https://www.ncbi.nlm.nih.gov/pubmed/19690306
- ↑ 26.0 26.1 Otsuka M, Koyama A, Matsuoka H Early palliative intervention for patients with advanced cancer. Jpn J Clin Oncol. 2013 Aug;43(8):788-94. PMID: https://www.ncbi.nlm.nih.gov/pubmed/23737605 Free Article
- ↑ 27.0 27.1 Kavalieratos D, Corbelli J, Zhang D et al Association Between Palliative Care and Patient and Caregiver Outcomes. A Systematic Review and Meta-analysis. JAMA. 2016;316(20):2104-2114. <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27893131 <Internet> http://jamanetwork.com/journals/jama/article-abstract/2585979
El-Jawahri A, LeBlanc T, VanDusen H et al Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation. A Randomized Clinical Trial. JAMA. 2016;316(20):2094-2103 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27893130 <Internet> http://jamanetwork.com/journals/jama/fullarticle/2585978
Malani PN, Widera E. The Promise of Palliative Care Translating Clinical Trials to Clinical Care. JAMA. 2016;316(20):2090-2091 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27893113 <Internet> http://jamanetwork.com/journals/jama/article-abstract/2585960 - ↑ 28.0 28.1 Brian Cassel J, Kerr KM, McClish DK et al Effect of a Home-Based Palliative Care Program on Healthcare Use and Costs. J Am Geriatr Soc. 2016 Nov;64(11):2288-2295. PMID: https://www.ncbi.nlm.nih.gov/pubmed/27590922
- ↑ 29.0 29.1 Agar MR, Lawlor PG, Quinn S et al Efficacy of Oral Risperidone, Haloperidol, or Placebo for Symptoms of Delirium Among Patients in Palliative Care. A Randomized Clinical Trial. JAMA Intern Med. Published online December 5, 2016 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27918778 <Internet> http://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2588810
- ↑ 30.0 30.1 Temel JS et al. Effects of early integrated palliative care in patients with lung and GI cancer: A randomized clinical trial. J Clin Oncol 2017 Mar 10; 35:834. PMID: https://www.ncbi.nlm.nih.gov/pubmed/28029308
- ↑ Morrison RS, Meier DF Palliative Care N Engl J Med 2004; 350:2582-2590. June 17, 2004 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/15201415 <Internet> http://www.nejm.org/doi/full/10.1056/NEJMcp035232
- ↑ 32.0 32.1 McIlvennan CK, Allen LA. Palliative care in patients with heart failure. BMJ. 2016;353:i1010 PMID: https://www.ncbi.nlm.nih.gov/pubmed/27079896 Free full text
- ↑ 33.0 33.1 MedPage Today Staff. Feb 8, 2018 Palliative Care Docs: Ask About Bucket Lists (J Palliat Med) Can help tailor end-of-life treatment decisions. https://www.medpagetoday.com/geriatrics/generalgeriatrics/71042
Periyakoil Vyjeyanthi S, Neri E, Kraemer H Common Items on a Bucket List. Journal of Palliative Medicine. February 2018 http://online.liebertpub.com/doi/10.1089/jpm.2017.0512 - ↑ Bade BC, Silvestri GA Palliative Care in Lung Cancer: A Review. Semin Respir Crit Care Med. 2016 Oct;37(5):750-759. Review. PMID: https://www.ncbi.nlm.nih.gov/pubmed/27732996
- ↑ 35.0 35.1 Ruangsomboon O, Dorongthom T, Chakorn T et al. High-flow nasal cannula versus conventional oxygen therapy in relieving dyspnea in emergency palliative patients with do-not-intubate status: A randomized crossover study. Ann Emerg Med 2019 Dec 18; PMID: https://www.ncbi.nlm.nih.gov/pubmed/31864728 Free Article https://www.annemergmed.com/article/S0196-0644(19)31227-2/fulltext
- ↑ Quinn KL et al. Association between palliative care and healthcare outcomes among adults with terminal non-cancer illness: Population based matched cohort study. BMJ 2020 Jul 6; 370:m2257. PMID: https://www.ncbi.nlm.nih.gov/pubmed/32631907 Free PMC article https://www.bmj.com/content/370/bmj.m2257
- ↑ 37.0 37.1 Gupta A, Sedhom R, Sharma R et al Nonpharmacological Interventions for Managing Breathlessness in Patients With Advanced Cancer: A Systematic Review. JAMA Oncol. 2021 Feb 1;7(2):290-298. PMID: https://www.ncbi.nlm.nih.gov/pubmed/33211072
- ↑ 38.0 38.1 Feliciano JL, Waldfogel JM, Sharma R et al Pharmacologic Interventions for Breathlessness in Patients With Advanced Cancer. A Systematic Review and Meta-analysis. JAMA Netw Open. 2021;4(2):e2037632 Feb 25 PMID: https://www.ncbi.nlm.nih.gov/pubmed/33630086 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776899
- ↑ 39.0 39.1 Quinn KL, Wegier P, Stukel TA et al. Comparison of palliative care delivery in the last year of life between adults with terminal noncancer illness or cancer. JAMA Netw Open 2021 Mar 1; 4:e210677. PMID: https://www.ncbi.nlm.nih.gov/pubmed/33662135 Free article https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776971
- ↑ De Graeff A, Dean M. Palliative sedation therapy: a systematic literature review and critical appraisal of available guidance on indication and decision making. J Palliat Med. 2014;17(5):601-611 PMID: https://www.ncbi.nlm.nih.gov/pubmed/24809466 https://www.liebertpub.com/doi/10.1089/jpm.2013.0511
- ↑ Payne SA, Hasselaar J. European Palliative Sedation Project. J Palliat Med. 2020;23(2):154-155 PMID: https://www.ncbi.nlm.nih.gov/pubmed/32023195 PMCID: PMC7138599 Free PMC article https://www.liebertpub.com/doi/10.1089/jpm.2019.0606
- ↑ Twycross R. Reflections on palliative sedation. Palliat Care: Res & Treat. 2019;12:1-16 PMID: https://www.ncbi.nlm.nih.gov/pubmed/30728718 PMCID: PMC6350160 Free PMC article https://journals.sagepub.com/doi/10.1177/1178224218823511
- ↑ Berger JT. The ethics of deactivating implanted cardioverter defibrillators. Ann Intern Med. 2005. PMID: https://www.ncbi.nlm.nih.gov/pubmed/15838070
Carlsson J, Paul NW, Dann M, Neuzner J, Pfeiffer D. The deactivation of implantable cardioverter-defibrillators: medical, ethical, practical, and legal considerations. Dtsch Arztebl Int. 2012 Aug;109(33-34):535-41. PMID: https://www.ncbi.nlm.nih.gov/pubmed/23152737 Free PMC article. Review.
Wan D, Chakrabarti S. Deactivation of implantable cardioverter-defibrillators. CMAJ. 2021 Jun 7;193(23):E852. PMID: https://www.ncbi.nlm.nih.gov/pubmed/34099469 Free PMC article. No abstract available. - ↑ Swetz KM, Kamal AH. Palliative Care Ann Intern Med. 2018 Mar 6;168(5):ITC33-ITC48 PMID: https://www.ncbi.nlm.nih.gov/pubmed/29507970 Review. https://www.acpjournals.org/doi/10.7326/AITC201803060
- ↑ 45.0 45.1 45.2 45.3 Bekelman DB et al. Nurse and social worker palliative telecare team and quality of life in patients with COPD, heart failure, or interstitial lung disease: The ADAPT randomized clinical trial. JAMA 2024 Jan 16; 331:212. PMID: https://www.ncbi.nlm.nih.gov/pubmed/38227034 PMCID: PMC10792473 (available on 2024-07-16) https://jamanetwork.com/journals/jama/fullarticle/2813881