Research Article
No access
Published Online: 1 March 2018

When a Patient Is Reluctant To Talk About It: A Dual Framework To Focus on Living Well and Tolerate the Possibility of Dying

Publication: Journal of Palliative Medicine
Volume 21, Issue Number 3

Abstract

Many patients with serious illness struggle to talk about the possibility of dying; yet basic prognostic awareness is crucial for informed decision making. In this article, we aim to help outpatient clinicians working with seriously ill patients ambivalent, uncomfortable, or fearful of further discussion about the future. We describe a dual framework that focuses on living well while acknowledging the possibility of dying and equips clinicians to help patients hold both possibilities. This dual framework facilitates the developmental process of living as fully as possible while also preparing for the possibility of dying.

Get full access to this article

View all available purchase options and get full access to this article.

References

1.
Shinn EH, Taylor CL, Kilgore K, et al.: Associations with worry about dying and hopelessness in ambulatory ovarian cancer patients. Palliat Support Care 2009;7:299–306.
2.
Hagerty RG, Butow PN, Ellis PA, et al.: Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 2004;22:1721–1730.
3.
Wenrich MD, Curtis JR, Shannon SE, et al.: Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001;161:868–874.
4.
Jenkins V, Fallowfield L, Saul J: Information needs of patients with cancer: Results from a large study in UK cancer centres. Br J Cancer 2001;84:48–51.
5.
Prouty CD, Mazor KM, Greene SM, et al.: Providers' perceptions of communication breakdowns in cancer care. J Gen Intern Med 2014;29:1122–1130.
6.
Pavlish C, Brown-Saltzman K, Fine A, Jakel P: A culture of avoidance: Voices from inside ethically difficult clinical situations. Clin J Oncol Nurs 2015;19:159–165.
7.
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;12:417–424.
8.
Dzeng E, Colaianni A, Roland M, et al.: Moral distress amongst American physician trainees regarding futile treatments at the end of life: A qualitative study. J Gen Intern Med 2016;31:93–99.
9.
Henrich NJ, Dodek PM, Alden L, et al.: Causes of moral distress in the intensive care unit: A qualitative study. J Crit Care 2016;35:57–62.
10.
McKay M, Wood J, Brantley J: The Dilectial Behavior Therpay Skills Workbook. Oakland, CA: New Harbinger Publications, Inc, 2007.
11.
Luom JB, Hayes, Steven C, et al.: Learning ACT; An Acceptance and Commitment Therapy Skills-Training Manual for Therapists. Oakland, CA: New Harbinger Publications, Inc, 2007.
12.
Thoma N, Pilecki B, McKay D: Contemporary cognitive behavior therapy: A review of theory, history, and evidence. Psychodyn Psychiatry 2015;43:423–461.
13.
Feros DL, Lane L, Ciarrochi J, Blackledge JT: Acceptance and Commitment Therapy (ACT) for improving the lives of cancer patients: A preliminary study. Psychooncology 2013;22:459–464.
14.
Mohabbat-Bahar S, Maleki-Rizi F, Akbari ME, Moradi-Joo M: Effectiveness of group training based on acceptance and commitment therapy on anxiety and depression of women with breast cancer. Iran J Cancer Prev 2015;8:71–76.
15.
Jackson VA, Jacobsen J, Greer JA, et al.: The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. J Palliat Med 2013;16:894–900.
16.
Jacobsen J, Jackson VA: A communication approach for oncologists: Understanding patient coping and communicating about bad news, palliative care, and hospice. J Natl Compr Canc Netw 2009;7:475–480.
17.
Weisman A: On Dying and Denying. New York, NY: Behavioral Publications, Inc, 1972.
18.
Curtis JR, Engelberg R, Young JP, et al.: An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008;11:610–620.
19.
Block SD: Psychological issues in end-of-life care. J Palliat Med 2006;9:751–772.
20.
Back AL, Arnold RM, Quill TE: Hope for the best, and prepare for the worst. Ann Intern Med 2003;138:439–443.
21.
van Vliet L, Francke A, Tomson S, et al.: When cure is no option: How explicit and hopeful can information be given? A qualitative study in breast cancer. Patient Educ Couns 2013;90:315–322.
22.
Casellas-Grau A, Ochoa C, Ruini C: Psychological and clinical correlates of posttraumatic growth in cancer: A systematic and critical review. Psychooncology 2017. [Epub ahead of print.]
23.
Ransom S, Sheldon KM, Jacobsen PB: Actual change and inaccurate recall contribute to posttraumatic growth following radiotherapy. J Consult Clin Psychol 2008;76:811–819.
24.
McCaffrey N, Bradley S, Ratcliffe J, Currow DC: What aspects of quality of life are important from palliative care patients' perspectives? A systematic review of qualitative research. J Pain Symptom Manage 2016;52:318–328.e5.
25.
Seligman ME: Authentic Happiness: Using the New Positive Psychology to Realize Your Potential for Lasting Fulfillment. New York, NY: The Free Press, 2002.
26.
Nipp R, Greer J, El-Jawahri A, et al.: Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol 2017;35:2551–2557.
27.
Schreuders B, van Oppen P, van Marwijk HW, et al.: Frequent attenders in general practice: Problem solving treatment provided by nurses [ISRCTN51021015]. BMC Fam Pract 2005;6:42.
28.
Jacobsen J, Kvale E, Rabow M, et al.: Helping patients with serious illness live well through the promotion of adaptive coping: A report from the improving outpatient palliative care (IPAL-OP) initiative. J Palliat Med 2014;17:463–468.
29.
Lamas DJ, Owens RL, Nace RN, et al.: Conversations about goals and values are feasible and acceptable in long-term acute care hospitals: A pilot study. J Palliat Med 2017;20:710–715.
30.
Maslow AH: A theory of human motivation. Psychol Rev 1943;50:370–396.
31.
van Osch M, Sep M, van Vliet LM, et al.: Reducing patients' anxiety and uncertainty, and improving recall in bad news consultations. Health Psychol 2014;33:1382–1390.
32.
Guerrero-Torrelles M, Monforte-Royo C, Rodriguez-Prat A, et al.: Understanding meaning in life interventions in patients with advanced disease: A systematic review and realist synthesis. Palliat Med 2017. [Epub ahead of print.]
33.
Pollak KI, Childers JW, Arnold RM: Applying motivational interviewing techniques to palliative care communication. J Palliat Med 2011;14:587–592.
34.
Pollak KI, Jones J, Lum HD, et al.: Patient and caregiver opinions of motivational interviewing techniques in role-played palliative care conversations: A pilot study. J Pain Symptom Manage 2015;50:91–98.
35.
Back AL, Arnold RM: Discussing prognosis: “How much do you want to know?” talking to patients who are prepared for explicit information. J Clin Oncol 2006;24:4209–4213.
36.
Back AL, Arnold RM: Discussing prognosis: “How much do you want to know?” talking to patients who do not want information or who are ambivalent. J Clin Oncol 2006;24:4214–4217.

Information & Authors

Information

Published In

cover image Journal of Palliative Medicine
Journal of Palliative Medicine
Volume 21Issue Number 3March 2018
Pages: 322 - 327
PubMed: 28972862

History

Published in print: March 2018
Published online: 1 March 2018
Published ahead of print: 3 October 2017
Accepted: 18 August 2017

Permissions

Request permissions for this article.

Topics

Authors

Affiliations

Juliet Jacobsen
Department of Palliative Care and Geriatrics, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.
Keri Brenner
Department of Palliative Care and Geriatrics, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.
Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.
Joseph A. Greer
Center for Psychiatric Oncology and Behavioral Sciences, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.
Michelle Jacobo
Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.
Leah Rosenberg
Department of Palliative Care and Geriatrics, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.
Ryan D. Nipp
Department of Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.
Vicki A. Jackson
Department of Palliative Care and Geriatrics, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts.

Notes

Address correspondence to:Juliet Jacobsen, MD, DPHDepartment of Palliative Care and GeriatricsHarvard Medical SchoolMassachusetts General Hospital55 Fruit Street, Founders 600Boston, MA 02114E-mail: [email protected]

Author Disclosure Statement

No competing financial interests exist.

Metrics & Citations

Metrics

Citations

Export citation

Select the format you want to export the citations of this publication.

View Options

Get Access

Access content

To read the fulltext, please use one of the options below to sign in or purchase access.

Society Access

If you are a member of a society that has access to this content please log in via your society website and then return to this publication.

Restore your content access

Enter your email address to restore your content access:

Note: This functionality works only for purchases done as a guest. If you already have an account, log in to access the content to which you are entitled.

View options

PDF/EPUB

View PDF/ePub

Full Text

View Full Text

Media

Figures

Other

Tables

Share

Share

Copy the content Link

Share on social media

Back to Top