Key Points
We adapted an SICP to be delivered via telehealth for older adults with hematologic malignancies.
The adapted SICP may facilitate earlier advance care planning discussions.
Abstract
Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) experience intense inpatient health care at the end-of-life stage. Early advance care planning may improve care at the end of life for patients with AML or MDS. The Serious Illness Care Program (SICP) is a multicomponent, communication intervention developed to improve conversations about values for patients with serious illnesses. The SICP has been shown to improve the quality and frequency of advance care planning discussions. We adapted the SICP for delivery via telehealth to older patients with AML or MDS. We conducted a single-center qualitative study of 45 participants (25 clinicians, 15 older patients with AML or MDS, and 5 caregivers). Participants, whether clinicians, patients, or caregivers, agreed that the SICP would help older patients with AML or MDS to share their personal values with their care team. Four qualitative themes emerged from our data: (1) serious illness conversations can be conducted via telehealth, (2) older patients have limited experience using technology but are willing and able to learn, (3) patients feel that serious illness conversations will help them understand their AML or MDS diagnosis and prognosis better, and (4) serious illness conversations should be common and routine, not extraordinary. The adapted SICP may provide older patients with AML or MDS an opportunity to share what matters most to them with their care team and may assist oncologists in aligning patient care with patient values. The adapted SICP is the subject of an ongoing single-arm pilot study at the Wilmot Cancer Institute (clinicaltrials.gov identifier: NCT04745676).
Introduction
Patients with hematologic malignancies, such as acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS), use more high-intensity care (eg, hospitalizations, intensive care unit admissions) at the end of life (EOL) than patients with solid tumors.1-3 Adults aged ≥60 years have lower survival rates than younger patients and are at risk for more rapid clinical declines.4 High inpatient health care use and in-hospital deaths are considered suboptimal at the EOL based on established quality of care metrics.5 Nevertheless, a retrospective study of 46 older patients with AML found that 51.2% spent the final month of their life in the hospital.6 Another study demonstrated that only 44.4% of older adults with AML enrolled in hospice at the EOL.7 Among patients enrolled in hospice, 47% and 28% enrolled in the last 7 days and 3 days of life, respectively.7
Advance care planning (ACP) is a process that supports patients in sharing their personal values regarding medical treatment.8 This process may include completion of advance directive forms (ie, medical order for life-sustaining treatment form, health care proxy, or living will), but more importantly, exploration of the patient’s values.9 Serious illness communication is a process that seeks to improve conversations about values and may include advance directive completion.10 Therefore, although the terminology is distinct, both processes have a similar intent, to identify patient values so that care aligns with what matters most to the patient.
The Serious Illness Care Program (SICP) is a multicomponent communication intervention developed to improve conversations about values for patients with serious illnesses.11 A cluster randomized clinical trial of the SICP in the outpatient setting for 278 patients with cancer found that patients who were randomized to the intervention arm experienced significant reductions in anxiety (5.0% vs 10.2%, P = .05) and depression (10.6% vs 20.8%, P = .04).12 Serious illness conversations (SICs) occurred more frequently with patients in the intervention arm compared with usual care (96% vs 79%, P = .005), and conversations took place 2.4 months earlier (P < .001). However, <10% of patients in the aforementioned study had a hematologic malignancy.12 The acuity and uncertainty associated with diagnoses of AML or MDS lead to unique challenges that can be addressed via processes such as ACP.13,14 In addition, compared with younger adults, older adults with AML or MDS are more likely to have aging-related vulnerabilities (eg, functional and cognitive impairments) that are associated with poorer outcomes.4,15-17 Therefore, we hypothesize that elicitation of patients’ preferences, worries, and preferred involvement in care early in their disease trajectory may ensure goal-concordant care for older patients with AML or MDS.
With the emergence of COVID-19, the use of telehealth visits increased.18 Use of telehealth interactions for patients with cancer is feasible and improves quality of life.19,20 Telehealth increases access to cancer specialists for patients residing in rural areas and allows support persons who may not live close to the patient to participate in health care visits.21 Telehealth potentially provides increased opportunities for SICs for older patients with AML or MDS, as well as involvement of caregivers, although its acceptability, efficacy, and overall effectiveness remain to be evaluated.
The primary aim of this qualitative study was to evaluate and adapt the SICP for delivery via telehealth to older patients with AML or MDS. The secondary aim was to explore clinician, patient, and caregiver perspectives on having SICs (including via telehealth) for older patients with AML or MDS.
Methods
Study design, population, and setting
We conducted a single-center qualitative study designed to assess and adapt the SICP for delivery via telehealth to older patients with AML or MDS.22 Participants were recruited from the Wilmot Cancer Institute (Rochester, NY) and its affiliated sites. Oncology clinicians, palliative care clinicians, patients with AML or MDS, and caregivers (if available) for patients with AML or MDS were recruited. The inclusion criteria for oncology and palliative care clinicians were physicians, nurses, or advance practitioners who cared for at least 1 patient aged ≥60 years with AML or MDS during the past year. The inclusion criteria for patients were being ≥60 years old with a diagnosis of AML or MDS, English-speaking, and able to provide informed consent. Caregivers were selected by the patient when asked if there is a family member, partner, friend, or caregiver (aged ≥21 years] with whom you discuss, or who can be helpful in, health-related matters, and spoke English. English-speaking was part of our inclusion criteria because the SICP documents are written in English. The institutional review board of the University of Rochester Medical Center provided approval for this study.
Study procedure and data collection
Data was reported using the consolidated criteria for reporting qualitative research guidelines (supplemental Table 1). Participants who consented to the study completed baseline measures and were provided with the SICP documents to review before their interview. They participated in 60-minute semistructured interviews focused on telehealth and feedback on the SICP (supplemental Table 2).
Data analyses
Demographics (of all participants) and clinical characteristics (of patients) were analyzed using descriptive statistics. Transcripts from the professional transcription service were analyzed using focused content analysis and open coding on MAXQDA (VERBI Software GmbH, Berlin, Germany). A preliminary coding schema was developed based on the first 2 transcripts and was modified based on subsequent analysis. Thematic saturation was achieved for patients and clinicians. We included caregivers if they were available to provide additional perspectives but did not aim to achieve thematic saturation in this group.
The SICP
The SICP is a multicomponent communication intervention developed to improve conversations about values for patients with serious illnesses.11 It is designed to (1) identify patients at high risk of death in the next year, (2) train clinicians to use the Serious Illness Conversation Guide (SICG) to structure ACP discussions with patients, (3) prompt oncology clinicians to have conversations using the guide with enrolled patients, (4) prepare patients for the conversation by providing them with a letter, the patient preparation letter, encouraging them to think about some of the topics raised in the SICG, (5) guide clinicians in conducting values and goals conversations, (6) document outcomes of the discussion in a structured format in the electronic medical record (EMR), and (7) provide patients with a family communication guide to help them continue discussions at home with their loved ones.11,12
Other components of the intervention include an interactive training session on the SICG for oncology clinicians delivered by palliative care experts, system changes for routine identification of patients at high risk of death, email reminders to clinicians to initiate conversations with patients, and a template in the EMR for documentation.11
Results
Of the 24 patients who were approached, 20 consented to this study (consent rate: 83%); 5 patients withdrew from the study after giving consent and therefore did not participate in the 60-minute semistructured interview. Of the 5 patients that withdrew, 2 patients had declining health status, 2 patients no longer wanted to participate at time of interview, and 1 patient was unable to be reached via phone after providing consent. We enrolled patients until thematic saturation was met. Six caregivers were approached, and 5 consented (consent rate: 83%). All 5 caregivers completed study procedures. Twenty-eight clinicians were approached, and 25 consented (consent rate: 89%). All 25 clinicians completed study procedures. The final sample size was 45 participants, and the study population comprised 15 patients, 5 caregivers, and 25 clinicians.
Demographics
Among the 45 participants, 16 were oncology clinicians, 9 were palliative care clinicians, 15 were patients with AML or MDS, and 5 were caregivers. Mean ages of oncology clinicians, palliative care clinicians, patients, and caregivers were 46, 49, 70, and 69 years, respectively. Demographic information for participants is shown in Tables 1 and 2. Clinical characteristics of patients are shown in Table 2. Patient and caregiver participants in this study had high health literacy with an average score of 5.7 (standard deviation, 0.6) and 6.0 (standard deviation, 0.0), respectively.
. | Oncology clinicians (n = 16) . | Palliative care clinicians (n = 9) . |
---|---|---|
Mean age, y (SD, range) | 46 (11, 30-67) | 49 (11, 33-67) |
Median age, y (IQR) | 45 (14.8) | 44 (11.5) |
Female (%) | 9 (56.3) | 2 (22.2) |
Race | ||
White (%) | 14 (87.5) | 8 (88.9) |
African American (%) | 1 (6.3) | 0 (0.0) |
Asian (%) | 0 (0.0) | 1 (11.1) |
Not reported (%) | 1 (6.3) | 0 (0.0) |
Ethnicity | ||
Hispanic or Latino | 1 (6.3) | 0 (0.0) |
Not Hispanic or Latino | 15 (93.7) | 15 (100.0) |
Mean y in practice (SD, range) | 13 (12, 0-40) | 15 (10, 1-34) |
Median y in practice (IQR) | 10 (19.0) | 14 (13.0) |
Physician (%) | 7 (43.8) | 7 (77.8) |
Advance practice practitioner (%) | 4 (25.0) | 2 (22.2) |
Nurse (%) | 5 (31.3) | 0 (0.0) |
. | Oncology clinicians (n = 16) . | Palliative care clinicians (n = 9) . |
---|---|---|
Mean age, y (SD, range) | 46 (11, 30-67) | 49 (11, 33-67) |
Median age, y (IQR) | 45 (14.8) | 44 (11.5) |
Female (%) | 9 (56.3) | 2 (22.2) |
Race | ||
White (%) | 14 (87.5) | 8 (88.9) |
African American (%) | 1 (6.3) | 0 (0.0) |
Asian (%) | 0 (0.0) | 1 (11.1) |
Not reported (%) | 1 (6.3) | 0 (0.0) |
Ethnicity | ||
Hispanic or Latino | 1 (6.3) | 0 (0.0) |
Not Hispanic or Latino | 15 (93.7) | 15 (100.0) |
Mean y in practice (SD, range) | 13 (12, 0-40) | 15 (10, 1-34) |
Median y in practice (IQR) | 10 (19.0) | 14 (13.0) |
Physician (%) | 7 (43.8) | 7 (77.8) |
Advance practice practitioner (%) | 4 (25.0) | 2 (22.2) |
Nurse (%) | 5 (31.3) | 0 (0.0) |
IQR, interquartile range; SD, standard deviation.
. | Patients (n = 15) . | Caregivers (n = 5; 1 caregiver missing data) . |
---|---|---|
Mean age, y (SD, range) | 70 (5, 61-80) | 69 (5, 62-75) |
Median age, y (IQR) | 72 (6.0) | 70 (4.8) |
Female (%) | 6 (40.0) | 3 (75.0) |
Race | ||
White (%) | 14 (93.3) | 4 (100.0) |
African American (%) | 0 (0.0) | 0 (0.0) |
Asian (%) | 1 (6.7) | 0 (0.0) |
Not reported (%) | 0 (0.0) | 0 (0.0) |
Ethnicity | ||
Hispanic or Latino | 1 (6.7) | 1 (25.0) |
Not Hispanic or Latino | 14 (93.3) | 3 (75.0) |
Level of education (%) | ||
High school | 4 (26.7) | 0 (0) |
Some college but did not complete | 3 (20.0) | 1 (25.0) |
Complete college education | 2 (13.3) | 2 (50.0) |
Postgraduate | 6 (40.0) | 1 (25.0) |
Marital status (%) | ||
Married | 7 (46.6) | 3 (75.0) |
Committed significant other | 1 (6.7) | 1 (25.0) |
Divorced | 3 (20.0) | 0 (0.0) |
Widowed | 3 (20.0) | 0 (0.0) |
Single | 1 (6.7) | 0 (0.0) |
Employment status (%) (data from 1 patient are missing) | 14 (100.0) | 4 (100.0) |
Retired | ||
Living at home with patient (%) (data from 1 patient are missing) | N/A | |
Partner | 7 (50.0) | |
Friend | 1 (7.1) | |
None | 6 (42.9) | |
Caregiver not living with patient (%) (data from 1 patient are missing) | N/A | |
Children | 2 (14.3) | |
Partner | 1 (7.1) | |
Other relative | 1 (7.1) | |
None | 10 (71.4) | |
Relationship to patient (%) | N/A | 4 (100.0) |
Partner | ||
Diagnosis (at time of interview) (%) | N/A | |
AML | 9 (60.0) | |
MDS | 6 (40.0) | |
Antecedent hematologic malignancies | N/A | |
MDS | 2 (13.3) | |
Chronic myelomonocytic leukemia | 1 (6.7) | |
Essential thrombocytosis | 1 (6.7) | |
Myeloproliferative disorder | 1 (6.7) | |
None | 11 (73.3) | |
Initial treatment at diagnosis (%) | N/A | |
Intensive treatment | 4 (26.7) | |
Lower-intensity treatment | 8 (53.3) | |
Best supportive care | 3 (20.0) | |
Comorbidities | N/A | |
Hypertension | 8 (53.3) | |
Depression | 5 (33.3) | |
Hyperlipidemia | 4 (26.7) | |
Diabetes | 4 (26.7) | |
Eastern Cooperative Oncology Group performance status (at time of interview) (%) | N/A | |
0 | 8 (53.3) | |
1 | 3 (20.0) | |
2 | 3 (20.0) | |
3 and 4 | 0 (0.0) | |
Not documented | 1 (6.7) |
. | Patients (n = 15) . | Caregivers (n = 5; 1 caregiver missing data) . |
---|---|---|
Mean age, y (SD, range) | 70 (5, 61-80) | 69 (5, 62-75) |
Median age, y (IQR) | 72 (6.0) | 70 (4.8) |
Female (%) | 6 (40.0) | 3 (75.0) |
Race | ||
White (%) | 14 (93.3) | 4 (100.0) |
African American (%) | 0 (0.0) | 0 (0.0) |
Asian (%) | 1 (6.7) | 0 (0.0) |
Not reported (%) | 0 (0.0) | 0 (0.0) |
Ethnicity | ||
Hispanic or Latino | 1 (6.7) | 1 (25.0) |
Not Hispanic or Latino | 14 (93.3) | 3 (75.0) |
Level of education (%) | ||
High school | 4 (26.7) | 0 (0) |
Some college but did not complete | 3 (20.0) | 1 (25.0) |
Complete college education | 2 (13.3) | 2 (50.0) |
Postgraduate | 6 (40.0) | 1 (25.0) |
Marital status (%) | ||
Married | 7 (46.6) | 3 (75.0) |
Committed significant other | 1 (6.7) | 1 (25.0) |
Divorced | 3 (20.0) | 0 (0.0) |
Widowed | 3 (20.0) | 0 (0.0) |
Single | 1 (6.7) | 0 (0.0) |
Employment status (%) (data from 1 patient are missing) | 14 (100.0) | 4 (100.0) |
Retired | ||
Living at home with patient (%) (data from 1 patient are missing) | N/A | |
Partner | 7 (50.0) | |
Friend | 1 (7.1) | |
None | 6 (42.9) | |
Caregiver not living with patient (%) (data from 1 patient are missing) | N/A | |
Children | 2 (14.3) | |
Partner | 1 (7.1) | |
Other relative | 1 (7.1) | |
None | 10 (71.4) | |
Relationship to patient (%) | N/A | 4 (100.0) |
Partner | ||
Diagnosis (at time of interview) (%) | N/A | |
AML | 9 (60.0) | |
MDS | 6 (40.0) | |
Antecedent hematologic malignancies | N/A | |
MDS | 2 (13.3) | |
Chronic myelomonocytic leukemia | 1 (6.7) | |
Essential thrombocytosis | 1 (6.7) | |
Myeloproliferative disorder | 1 (6.7) | |
None | 11 (73.3) | |
Initial treatment at diagnosis (%) | N/A | |
Intensive treatment | 4 (26.7) | |
Lower-intensity treatment | 8 (53.3) | |
Best supportive care | 3 (20.0) | |
Comorbidities | N/A | |
Hypertension | 8 (53.3) | |
Depression | 5 (33.3) | |
Hyperlipidemia | 4 (26.7) | |
Diabetes | 4 (26.7) | |
Eastern Cooperative Oncology Group performance status (at time of interview) (%) | N/A | |
0 | 8 (53.3) | |
1 | 3 (20.0) | |
2 | 3 (20.0) | |
3 and 4 | 0 (0.0) | |
Not documented | 1 (6.7) |
N/A, not applicable; SD, standard deviation.
SICP adaptation
We adapted the SICP documents to meet the unique needs of older patients with AML or MDS. In general, participants in this study reported that they liked the SICP and that it would be helpful for patients with AML or MDS to share their values with their care team. Specifically, 10 patients (67%) stated that they think that the SICP is a good idea and would be helpful, 2 patients (13%) stated that the SICP resembled discussions that they have already had, 2 (13%) patients said the SICP would be best if personalized to each patient, and 1 patient (7%) was not sure if the SICP would be helpful to them. Clinicians in this study reported that they would like an EMR documentation template and would be willing to participate in a training session to learn how to use the adapted SICP in clinical practice.
A study participant said: “I’m just happy you’re doing what you’re doing…I applaud you because in other cases that I’ve been with people, I haven’t seen this aspect of treatment offered…I think you’re spot on to be doing this study and to be offering people the opportunity to not wait until you’re told you got 3 weeks, 6 weeks, 3 months to live.”
Adaptation of patient preparation letter
Oncology clinicians suggested providing the patient with more examples of questions that they might ask at their SIC visit. They also suggested removing the language of “stable disease,” because AML or MDS are often unstable with a substantial risk of rapid decline in older patients. Patients thought that the wording of this guide was appropriate, but the visual layout of the paragraphs was overwhelming to look at. Patients suggested that a pamphlet-style patient preparation letter would look better. Table 3 shows changes made to the patient preparation letter. Figure 1A and B show the original and adapted patient preparation letters, respectively.
Adaptation . | Original patient preparation letter . | Adapted patient preparation letter . |
---|---|---|
Format | ||
Single-page document | Pamphlet | |
Language | ||
At your scheduled visit, your clinician would like to talk with you about your illness, your goals and wishes, and planning for the future. This is an important part of the care we provide for all of our patients. | At your scheduled visit, your care team would like to talk with you about your illness, your goals and wishes, and planning for the future. This is an important part of the care we provide for all of our patients. | |
Our team likes to start talking about this when patients are doing okay. Your illness is serious but stable, so now is a good time to talk about what is ahead, and to do some planning for the future. Patients who think through what is important to them and what their wishes are often feel less anxious, more at peace, and more in control of their situation. | Patients who think through what is important to them often feel less anxious, more at peace, and more in control of their situation. Talking with your care team lets them respect your wishes and help you plan for future. | |
Before your next meeting | Please prepare for your conversation by thinking about these things: • What would you like to know about your illness and what is likely to be ahead? • What kind of information would help you make decisions about your future? • What is most important for you to have a good quality of life? • What are you afraid of about your illness? • What kinds of medical care do you not want? • What do you think it would be like to share these thoughts with your family? • If you haven’t already identified a health care proxy, who would be able to fill that role? Please bring to your visit: • If you have a health care proxy form that is not on file at the hospital, please bring a copy. • If you have a living will or advance directive, please bring a copy.If you don’t have these documents or have questions about them, talk to your clinician. | Please prepare for your conversation by thinking about these things: • What kind of information would you like to know about your illness and how it will impact your future? • What is most important for you to have a good quality of life? • What are you worried about? • What do you think it would be like to share these thoughts with your family? • If you haven’t already identified a health care proxy, who would be able to fill that role? • Who do you want to be part of the conversation? • What would you like your care team to know about you? Things to bring to your visit: • A copy of your health care proxy form • A copy of your living will, advance directive, or a MOLST form If you have questions about them, talk to your clinician. |
Why is this important? | Thinking about and sharing your wishes will give you more control over the care you get. It will also help prepare your loved ones to make decisions for you if you can’t make them at some point in the future. Knowing what you want will ease the burden on your family of making hard decisions for you if you can’t speak for yourself. | Thinking about and sharing your wishes will: • Give you more control over the care you get. • Ease and prepare your caregiver to make decisions on your behalf if you can’t speak for yourself for you. |
Talking about the future won’t change your ongoing care | Talking about the future won’t change the plans we have made so far about your treatment, unless, of course, you want to. We will keep providing the best possible care to control your disease. | Having these conversations won't limit or change your care unless you want to. We will keep providing the best possible care to control your disease. |
You may find it helpful to bring other people to your next appointment | You can choose to bring the person who is your health care proxy or other family members to your next visit so they can be a part of the conversation. You can also bring your nurse practitioner, social worker, or chaplain if you like. Please let your clinician’s office know if you would like to bring others to the appointment. | You can choose to bring the person who is your health care proxy to your visit so they can be a part of the conversation. You can also bring: • Other caregivers/family members • Nurse • Social worker • Chaplain Please let your clinician’s office know if you would like to bring others to your in-person or telemedicine appointment. However, there may be restriction to in-person visits due to COVID-19. |
We understand that your wishes may change over time | This is the beginning of an ongoing conversation. We know that you may have other questions or concerns in the future. We will keep being here to support you and answer your questions so that you can make informed decisions. | We know that you may have other questions or concerns in the future. We will continue to support you and answer your questions so that you can make informed decisions. |
Questions to consider asking your care team | N/A | • How does my illness impact my future? • What symptoms am I going to have and are there treatments to control them? • What can I expect to be able to do in the future and are there any activities, places, or things I should avoid? • If my wishes change, how do I tell my care team? • What kind of support will I have? • Will I be able to stay home? • How can I help my caregiver(s) understand what is happening? |
Notes | N/A | You can use this page to write down questions for your clinician or your thoughts. |
Adaptation . | Original patient preparation letter . | Adapted patient preparation letter . |
---|---|---|
Format | ||
Single-page document | Pamphlet | |
Language | ||
At your scheduled visit, your clinician would like to talk with you about your illness, your goals and wishes, and planning for the future. This is an important part of the care we provide for all of our patients. | At your scheduled visit, your care team would like to talk with you about your illness, your goals and wishes, and planning for the future. This is an important part of the care we provide for all of our patients. | |
Our team likes to start talking about this when patients are doing okay. Your illness is serious but stable, so now is a good time to talk about what is ahead, and to do some planning for the future. Patients who think through what is important to them and what their wishes are often feel less anxious, more at peace, and more in control of their situation. | Patients who think through what is important to them often feel less anxious, more at peace, and more in control of their situation. Talking with your care team lets them respect your wishes and help you plan for future. | |
Before your next meeting | Please prepare for your conversation by thinking about these things: • What would you like to know about your illness and what is likely to be ahead? • What kind of information would help you make decisions about your future? • What is most important for you to have a good quality of life? • What are you afraid of about your illness? • What kinds of medical care do you not want? • What do you think it would be like to share these thoughts with your family? • If you haven’t already identified a health care proxy, who would be able to fill that role? Please bring to your visit: • If you have a health care proxy form that is not on file at the hospital, please bring a copy. • If you have a living will or advance directive, please bring a copy.If you don’t have these documents or have questions about them, talk to your clinician. | Please prepare for your conversation by thinking about these things: • What kind of information would you like to know about your illness and how it will impact your future? • What is most important for you to have a good quality of life? • What are you worried about? • What do you think it would be like to share these thoughts with your family? • If you haven’t already identified a health care proxy, who would be able to fill that role? • Who do you want to be part of the conversation? • What would you like your care team to know about you? Things to bring to your visit: • A copy of your health care proxy form • A copy of your living will, advance directive, or a MOLST form If you have questions about them, talk to your clinician. |
Why is this important? | Thinking about and sharing your wishes will give you more control over the care you get. It will also help prepare your loved ones to make decisions for you if you can’t make them at some point in the future. Knowing what you want will ease the burden on your family of making hard decisions for you if you can’t speak for yourself. | Thinking about and sharing your wishes will: • Give you more control over the care you get. • Ease and prepare your caregiver to make decisions on your behalf if you can’t speak for yourself for you. |
Talking about the future won’t change your ongoing care | Talking about the future won’t change the plans we have made so far about your treatment, unless, of course, you want to. We will keep providing the best possible care to control your disease. | Having these conversations won't limit or change your care unless you want to. We will keep providing the best possible care to control your disease. |
You may find it helpful to bring other people to your next appointment | You can choose to bring the person who is your health care proxy or other family members to your next visit so they can be a part of the conversation. You can also bring your nurse practitioner, social worker, or chaplain if you like. Please let your clinician’s office know if you would like to bring others to the appointment. | You can choose to bring the person who is your health care proxy to your visit so they can be a part of the conversation. You can also bring: • Other caregivers/family members • Nurse • Social worker • Chaplain Please let your clinician’s office know if you would like to bring others to your in-person or telemedicine appointment. However, there may be restriction to in-person visits due to COVID-19. |
We understand that your wishes may change over time | This is the beginning of an ongoing conversation. We know that you may have other questions or concerns in the future. We will keep being here to support you and answer your questions so that you can make informed decisions. | We know that you may have other questions or concerns in the future. We will continue to support you and answer your questions so that you can make informed decisions. |
Questions to consider asking your care team | N/A | • How does my illness impact my future? • What symptoms am I going to have and are there treatments to control them? • What can I expect to be able to do in the future and are there any activities, places, or things I should avoid? • If my wishes change, how do I tell my care team? • What kind of support will I have? • Will I be able to stay home? • How can I help my caregiver(s) understand what is happening? |
Notes | N/A | You can use this page to write down questions for your clinician or your thoughts. |
N/A, not applicable; MOLST, medical order for life-sustaining treatment.
SICG adaptation
Oncology clinicians suggested that the language of the SICG be simplified. They offered suggestions for wording that would better gauge the patients’ understanding of their diagnosis. Oncology clinicians also recommended changing the wording of the subcategories under the “share” section, removing the terms “wish” and “worried” from the language of the guide and focusing on what is likely for patients rather than what is ahead. Patients agreed with oncology clinicians that the word “worried” should be removed from the SICG. Patients advised against using the word “goal,” because the meaning behind a goal is defined differently by all individuals (ie, some may define functionality as a goal whereas others may have the goal to live until a particular event). Patients suggested that clinicians be honest in sharing prognostic information with patients. Table 4 shows the changes made to the SICG. Figure 2A and B show the original and adapted SICG, respectively.
Adaptation . | Original SICG . | Adapted SICG . |
---|---|---|
Format | ||
Page 1: SICG | Page 1: summary/checklist | |
Page 2: summary/checklist | Page 2: SICG | |
Language | ||
“Set up” | “I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want; is this okay?” | “Many patients like to talk about what is ahead with their illness and think about what is important to them. This is part of the care we provide for all of our patients to make sure that we provide the care you want; is this something you would like to talk about?” |
“Assess” | “How much information about what is likely to be ahead with your illness would you like from me?” | “What kind of information would you like to know about what is ahead with your illness?” |
“Share” | “I want to share with you my understanding of where things are with your illness…” | “I want to share with you my understanding of where things are with your illness – is that something you [and others] would like to know” |
Uncertain: “It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I’m worried that you could get sick quickly, and I think it is important to prepare for that possibility.” | Uncertainty: “It can be difficult to predict what will happen with your illness. I hope you will be able to live the life you want, but and it is possible that you could get sick quickly. I think it is important to prepare for that possibility.” | |
Time: “I wish we were not in this situation, but I am worried that time may be as short as ___ (express as a range, eg, days to weeks, weeks to months, months to a year).” | Prognosis: “I wish we were not in this situation, but it is possible that time may be as short as [express as a range, eg, days to weeks, weeks to months, months to a year].” | |
Function: “I hope that this is not the case, but I’m worried that this may be as strong as you will feel, and things are likely to get more difficult.” | Functional status: “I hope this is not the case, but patients in your situation may have more physical difficulty in the upcoming [days, weeks, years]. It is possible that things may get harder for you.” | |
“Explore” | “What are your most important goals if your health situation worsens?” | “What is most important to you (goal) if your health worsens?” |
“What are your biggest fears and worries about the future with your health?” | “Do you have any worries or fears about your health? If so, what worries you the most?” | |
“What gives you strength as you think about the future with your illness?” | “What gives you strength as you think about the future with your health?” | |
“What abilities are so critical to your life that you can’t imagine living without them?” | Removed from adapted guide | |
“If you become sicker, how much are you willing to go through for the possibility of gaining more time?” | “If you become sicker, what are you willing to go through for the possibility of living longer?” | |
“How much does your family know about your priorities and wishes?” | “How much does your caregiver/family know about your feelings regarding your illness?” | |
Added into adapted guide | “Is there something really important for me to understand about you?” | |
“Close” | “I’ve heard you say that ___ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” | “I’ve heard you say that ___ is really important to you. I would like to share my recommendations based on what we have talked about; is this okay? Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” |
“How does this plan seem to you?” | “Would you like to add anything to that?” | |
Added into adapted guide | “We could have a meeting with your caregiver/family and talk more about this.” | |
“I will do everything I can to help you through this.” | “I care about what happens to you and I will continue to help you through this.” |
Adaptation . | Original SICG . | Adapted SICG . |
---|---|---|
Format | ||
Page 1: SICG | Page 1: summary/checklist | |
Page 2: summary/checklist | Page 2: SICG | |
Language | ||
“Set up” | “I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want; is this okay?” | “Many patients like to talk about what is ahead with their illness and think about what is important to them. This is part of the care we provide for all of our patients to make sure that we provide the care you want; is this something you would like to talk about?” |
“Assess” | “How much information about what is likely to be ahead with your illness would you like from me?” | “What kind of information would you like to know about what is ahead with your illness?” |
“Share” | “I want to share with you my understanding of where things are with your illness…” | “I want to share with you my understanding of where things are with your illness – is that something you [and others] would like to know” |
Uncertain: “It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I’m worried that you could get sick quickly, and I think it is important to prepare for that possibility.” | Uncertainty: “It can be difficult to predict what will happen with your illness. I hope you will be able to live the life you want, but and it is possible that you could get sick quickly. I think it is important to prepare for that possibility.” | |
Time: “I wish we were not in this situation, but I am worried that time may be as short as ___ (express as a range, eg, days to weeks, weeks to months, months to a year).” | Prognosis: “I wish we were not in this situation, but it is possible that time may be as short as [express as a range, eg, days to weeks, weeks to months, months to a year].” | |
Function: “I hope that this is not the case, but I’m worried that this may be as strong as you will feel, and things are likely to get more difficult.” | Functional status: “I hope this is not the case, but patients in your situation may have more physical difficulty in the upcoming [days, weeks, years]. It is possible that things may get harder for you.” | |
“Explore” | “What are your most important goals if your health situation worsens?” | “What is most important to you (goal) if your health worsens?” |
“What are your biggest fears and worries about the future with your health?” | “Do you have any worries or fears about your health? If so, what worries you the most?” | |
“What gives you strength as you think about the future with your illness?” | “What gives you strength as you think about the future with your health?” | |
“What abilities are so critical to your life that you can’t imagine living without them?” | Removed from adapted guide | |
“If you become sicker, how much are you willing to go through for the possibility of gaining more time?” | “If you become sicker, what are you willing to go through for the possibility of living longer?” | |
“How much does your family know about your priorities and wishes?” | “How much does your caregiver/family know about your feelings regarding your illness?” | |
Added into adapted guide | “Is there something really important for me to understand about you?” | |
“Close” | “I’ve heard you say that ___ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” | “I’ve heard you say that ___ is really important to you. I would like to share my recommendations based on what we have talked about; is this okay? Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” |
“How does this plan seem to you?” | “Would you like to add anything to that?” | |
Added into adapted guide | “We could have a meeting with your caregiver/family and talk more about this.” | |
“I will do everything I can to help you through this.” | “I care about what happens to you and I will continue to help you through this.” |
Family letter adaptation
Oncology clinicians liked the family guide and shared that they believe it would have a positive impact on patients’ ability to communicate with their loved ones. Patients agreed and some patients stated that the family guide reflected their own personal conversations with their family. No changes were made to the family guide.
Qualitative feedback
Four major qualitative themes were identified in this study: (1) SICs can be conducted via telehealth, (2) older patients have limited experience using technology but are willing and able to learn, (3) patients feel that SIC will help them understand their AML or MDS diagnosis and prognosis better, and (4) SICs should be common and routine, not extraordinary. Representative quotes are shown in Table 5.
Themes . | Exemplar quote . |
---|---|
1. SICs can be conducted via telehealth | |
Telehealth may increase patient comfort | Oncology clinician 1: “I think it’s a great idea to have – I think it’s good that patients are in their home environment to have that conversation. I think it’s probably a more comfortable environment for them to be in and have that kind of conversation. I think it’s a perfect visit to do over telehealth because you don’t need a physical exam.” |
Oncology clinician 2: “I think it probably has a place and I think that whether that’s – again, because of time issues in the clinic, it probably would open up some additional time venues where this could be done…I think that can be valuable because most of these conversations do not require a physical exam, so I think they can be accomplished by telehealth.” | |
Oncology clinician 11: “They might feel safer doing it over Zoom because they might feel like they have more control, and they are not sitting there in that stark exam room having this depressing conversation. They are in their own home with their wife on the couch next to them. So, I think it’s a good thing to do.” | |
Oncology clinician 16: “I think that it could be a useful tool and it could engage more people beyond just the patient too, which could be helpful.” | |
Palliative care clinician 8: “I’ve realized it’s a really good resource. I don’t think it should be used as the sole resource with all of our patients, but certainly there’s a time and place for telehealth. A lot of times our folks are very weak or symptomatic. For some of my folks, before telehealth, it would be all that they could do to muster up the energy and come in and then they’d be shot for the rest of the day and that’s not fair.” | |
Patient 8: “Thank heavens for Zoom and the phone because I’m in my own little bubble here because I have to be careful with this leukemia. I can’t, I will not go in crowds. I will go to the store, but my big thing is not going in crowds because I don’t know who’s been vaccinated.” | |
Caregiver 4: “I’ve been on several of the telehealth appointments…and without any other options during the COVID, it was great. It was great to be able to see a face of the person that’s caring for your spouse, and to be able to ask some questions as well, that sometimes it’s hard when you’re on the phone and you get cut off and all of that, so you could put a face to the name. They’ve all been positive experiences.” | |
Telehealth may make interpretation of body language difficult | Oncology clinician 3: “If I’m doing it, I prefer to have it by video because I think that I kind of shaped my tone and my conversation topics based on a lot of what people’s expressions are, their body language, do they seem comfortable? Do they seem engaged?” |
Palliative care clinician 3: “And at the same time it’s harder to pick up people’s body language a little bit. You know, there’s somebody off camera that’s giving them a look and I can’t see that.” | |
Palliative care clinician 9: “I do think sometimes with telehealth and this allowing of multiple people to be involved, it can be overwhelming at times, I think another challenge is all of a sudden now you have 12 voices. All of those voices might not be on the same page and maybe they don’t even all carry the same weight, but you’re now kind of dealing with all of these voices.” | |
Patient 2: “That was kind of scary to me because to me, when you see a doctor, I think a lot of times they can kind of read, for one, your appearance, maybe your skin color or your speech or your attitude, and I felt as if you’re doing that virtually and everything, there might be something missing.” | |
Patient 4: “You can tell by somebody’s eyes, their gestures or something like that if they’re uncomfortable with something. They may want to talk about something they’re very hesitant about, you can see that in somebody and feel it, but you can’t do that by computer or phone.” | |
Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table. And the other thing is with masks. With telehealth, you don’t need a mask. So, you’re able to see the full face, the expressions, where with a mask on it’s tough to tell expressions.” | |
2. Older patients have limited experience with technology but are willing and able to learn | |
Patients’ current experience with technology is limited | Oncology clinician 5: “The other one is sometimes they need somebody who is young, you know, more, you know, in touch with technology to make the arrangements and then things just don’t work.” |
Oncology clinician 6: “This is an older patient population and doing these things over the phone is not optimal. Many of our patients don’t have video so that’s not always helpful. So, that has become a barrier.” | |
Oncology clinician 9: “The technical difficulties that tend to arise, especially in that demographic. They’re not the most tech savvy…it would be frustrating for the patient to try and have this sensitive of a conversation if there were technical issues.” | |
Palliative care clinician 7: “I think it may be a little bit more difficult on the phone and I understand that technology may be a barrier for the geriatric population.” | |
Patient 5: “I’m pushing 77 and I do computer, but I don’t have a smart phone. Now as things traveled on the road and the people that are now in their 40s and 50s get to be 70 and 80, they canprobably handle it, but I think our generation right at the moment, that is probably the most critical in health care are not quite as savvy. I think people now that are like myself, my age group, and so on are just kind of ‘Well, I guess I can.’” | |
Patient 10: “I’m 73, technology is a mystery to me.” | |
Caregiver 3: “You’re also going to be dealing with people that are much older that have no clue how to navigate this. If you were to tell my mom right now that her only option in dealing with this is to do it via Zoom or via Teams meeting, she’d be like, ‘What the hell are you talking about?’” | |
Patients are willing to learn how to use telehealth | Patient 6: “After I figured it out, it was good that I didn’t have to travel 3 hours to a follow-up. It was nice to be able to actually see him and him see me and to actually see his expressions. I think it’s awesome.” |
Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table.” | |
3. Patients feel that SICs will help them better understand their AML or MDS diagnosis and prognosis | |
Patients should be prepared to have a SIC | Oncology clinician 6: “It’s usually the very early stuff that I find is the most tricky to walk. Not always, but in general that’s when tensions are highest and the relationship is the newest and they’re trying to sort, you know, they’re engaging you, you’re trying to get through it.” |
Oncology clinician 16: “I think patients need to understand what they’re about to discuss.” | |
Patient 5: “There’s also things like these documents, I can sit down on my desk and read them over and absorb a lot more from the document than having them throw it at me in the hospital bed.” | |
Patient 13: “The conversations, I think they’re valuable because it opens things up. You have a better understanding [of] what to expect and what to do. There’s no questions because you know what to do, because I have told you, or I have indicated that this is what I want done or not done depending on the situation.” | |
Patient 13: “I want to know what’s going on. What are we talking about here? What’s the long-term prognosis? What’s the short-term prognosis? I want to know these things. I want to be prepared. I want to know what to expect.” | |
Caregiver 4: “And again, huge communication. It helps so much, it helps that patient, it helps the caregiver, and I’m sure it helps the health care team when they know they’ve got everybody, you try to all be on the same page, the best that you can. I think that’s only going to help the patient going forward.” | |
Positivity is important when communicating with patients about their illness | Oncology clinician 14: “I think early on I can send a message of not distrust, but skepticism. I think you can potentially fracture that partnership that you have with the patients.” |
Patient 4: “Don’t look at the patient like, ‘you’re going to die.’ That’s too bad. I’m here to help you. Let’s walk through this together.” | |
Patient 6: “You need to keep in these papers to try to have a positive outlook – don’t give up, don’t let this consume you, understand your illness or the diagnosis, but you’ve got to work at it.” | |
Patient 10: “I think you shouldn’t take it for granted that if a person is ill, they don’t want to hear ‘worried’ or ‘days,’ ‘months;’ they want the truth, but they want to have it put to them in positive ways.” | |
4. SICs should be common and routine, not extraordinary | |
All clinicians should be comfortable having SICs with patients | Oncology clinician 4: “Trying to adopt a more uniform approach…would be a great place to start.” |
Oncology clinician 7: “Universal application across the provider group.” | |
Patient 6: “You have to portray when you talk to somebody about it, this is very scary to me because you’re talking about all this right now and I’m trying to get better and trying to go into remission and all that. But it needs to be portrayed as in the event that, rather than you need to do this now, because.” | |
Patient 8: “Not at the end, when a person is so sick that they can’t speak. When they’re more healthy than down the road when they might not be able to answer those questions that should be done early on.” | |
Palliative care clinician 4: “When patients are getting roomed, part of rooming them is the nurse checks whether they have a health care proxy on file, and we’ll flag anyone who doesn’t have one. Or a MOLST on file, and it flags people who don’t have one. Finding ways to routinely bring to the attention of the person that something hasn’t gotten done or needs to be done.” | |
Palliative care clinician 6: “If it’s part of our culture and part of our workflow to know what matters most to the patient, every visit every time, then the stuff that’s already been done doesn’t get missed. But in our system, we do have a pretty standard way to document and track ACP. Again, it’s just a matter of, do you bother to access it? Do you know what’s there?” | |
Palliative care clinician 7: “Even with a guide like this, I think it would be hard, but I’m thinking about more of the medical oncologists. This should not be a specialty skill. This should be a general skill that everybody has, talking about ACP and goals. It shouldn’t be special. It should just be good care, not special care.” | |
Patients want their oncologist to lead their SIC | Patient 13: “The doctor would be the one because he has all the facts, and he has the background and expertise. I prefer a doctor that is going to be very direct with you about it and on the other side is not going to make you feel bad about having to do it.” |
Themes . | Exemplar quote . |
---|---|
1. SICs can be conducted via telehealth | |
Telehealth may increase patient comfort | Oncology clinician 1: “I think it’s a great idea to have – I think it’s good that patients are in their home environment to have that conversation. I think it’s probably a more comfortable environment for them to be in and have that kind of conversation. I think it’s a perfect visit to do over telehealth because you don’t need a physical exam.” |
Oncology clinician 2: “I think it probably has a place and I think that whether that’s – again, because of time issues in the clinic, it probably would open up some additional time venues where this could be done…I think that can be valuable because most of these conversations do not require a physical exam, so I think they can be accomplished by telehealth.” | |
Oncology clinician 11: “They might feel safer doing it over Zoom because they might feel like they have more control, and they are not sitting there in that stark exam room having this depressing conversation. They are in their own home with their wife on the couch next to them. So, I think it’s a good thing to do.” | |
Oncology clinician 16: “I think that it could be a useful tool and it could engage more people beyond just the patient too, which could be helpful.” | |
Palliative care clinician 8: “I’ve realized it’s a really good resource. I don’t think it should be used as the sole resource with all of our patients, but certainly there’s a time and place for telehealth. A lot of times our folks are very weak or symptomatic. For some of my folks, before telehealth, it would be all that they could do to muster up the energy and come in and then they’d be shot for the rest of the day and that’s not fair.” | |
Patient 8: “Thank heavens for Zoom and the phone because I’m in my own little bubble here because I have to be careful with this leukemia. I can’t, I will not go in crowds. I will go to the store, but my big thing is not going in crowds because I don’t know who’s been vaccinated.” | |
Caregiver 4: “I’ve been on several of the telehealth appointments…and without any other options during the COVID, it was great. It was great to be able to see a face of the person that’s caring for your spouse, and to be able to ask some questions as well, that sometimes it’s hard when you’re on the phone and you get cut off and all of that, so you could put a face to the name. They’ve all been positive experiences.” | |
Telehealth may make interpretation of body language difficult | Oncology clinician 3: “If I’m doing it, I prefer to have it by video because I think that I kind of shaped my tone and my conversation topics based on a lot of what people’s expressions are, their body language, do they seem comfortable? Do they seem engaged?” |
Palliative care clinician 3: “And at the same time it’s harder to pick up people’s body language a little bit. You know, there’s somebody off camera that’s giving them a look and I can’t see that.” | |
Palliative care clinician 9: “I do think sometimes with telehealth and this allowing of multiple people to be involved, it can be overwhelming at times, I think another challenge is all of a sudden now you have 12 voices. All of those voices might not be on the same page and maybe they don’t even all carry the same weight, but you’re now kind of dealing with all of these voices.” | |
Patient 2: “That was kind of scary to me because to me, when you see a doctor, I think a lot of times they can kind of read, for one, your appearance, maybe your skin color or your speech or your attitude, and I felt as if you’re doing that virtually and everything, there might be something missing.” | |
Patient 4: “You can tell by somebody’s eyes, their gestures or something like that if they’re uncomfortable with something. They may want to talk about something they’re very hesitant about, you can see that in somebody and feel it, but you can’t do that by computer or phone.” | |
Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table. And the other thing is with masks. With telehealth, you don’t need a mask. So, you’re able to see the full face, the expressions, where with a mask on it’s tough to tell expressions.” | |
2. Older patients have limited experience with technology but are willing and able to learn | |
Patients’ current experience with technology is limited | Oncology clinician 5: “The other one is sometimes they need somebody who is young, you know, more, you know, in touch with technology to make the arrangements and then things just don’t work.” |
Oncology clinician 6: “This is an older patient population and doing these things over the phone is not optimal. Many of our patients don’t have video so that’s not always helpful. So, that has become a barrier.” | |
Oncology clinician 9: “The technical difficulties that tend to arise, especially in that demographic. They’re not the most tech savvy…it would be frustrating for the patient to try and have this sensitive of a conversation if there were technical issues.” | |
Palliative care clinician 7: “I think it may be a little bit more difficult on the phone and I understand that technology may be a barrier for the geriatric population.” | |
Patient 5: “I’m pushing 77 and I do computer, but I don’t have a smart phone. Now as things traveled on the road and the people that are now in their 40s and 50s get to be 70 and 80, they canprobably handle it, but I think our generation right at the moment, that is probably the most critical in health care are not quite as savvy. I think people now that are like myself, my age group, and so on are just kind of ‘Well, I guess I can.’” | |
Patient 10: “I’m 73, technology is a mystery to me.” | |
Caregiver 3: “You’re also going to be dealing with people that are much older that have no clue how to navigate this. If you were to tell my mom right now that her only option in dealing with this is to do it via Zoom or via Teams meeting, she’d be like, ‘What the hell are you talking about?’” | |
Patients are willing to learn how to use telehealth | Patient 6: “After I figured it out, it was good that I didn’t have to travel 3 hours to a follow-up. It was nice to be able to actually see him and him see me and to actually see his expressions. I think it’s awesome.” |
Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table.” | |
3. Patients feel that SICs will help them better understand their AML or MDS diagnosis and prognosis | |
Patients should be prepared to have a SIC | Oncology clinician 6: “It’s usually the very early stuff that I find is the most tricky to walk. Not always, but in general that’s when tensions are highest and the relationship is the newest and they’re trying to sort, you know, they’re engaging you, you’re trying to get through it.” |
Oncology clinician 16: “I think patients need to understand what they’re about to discuss.” | |
Patient 5: “There’s also things like these documents, I can sit down on my desk and read them over and absorb a lot more from the document than having them throw it at me in the hospital bed.” | |
Patient 13: “The conversations, I think they’re valuable because it opens things up. You have a better understanding [of] what to expect and what to do. There’s no questions because you know what to do, because I have told you, or I have indicated that this is what I want done or not done depending on the situation.” | |
Patient 13: “I want to know what’s going on. What are we talking about here? What’s the long-term prognosis? What’s the short-term prognosis? I want to know these things. I want to be prepared. I want to know what to expect.” | |
Caregiver 4: “And again, huge communication. It helps so much, it helps that patient, it helps the caregiver, and I’m sure it helps the health care team when they know they’ve got everybody, you try to all be on the same page, the best that you can. I think that’s only going to help the patient going forward.” | |
Positivity is important when communicating with patients about their illness | Oncology clinician 14: “I think early on I can send a message of not distrust, but skepticism. I think you can potentially fracture that partnership that you have with the patients.” |
Patient 4: “Don’t look at the patient like, ‘you’re going to die.’ That’s too bad. I’m here to help you. Let’s walk through this together.” | |
Patient 6: “You need to keep in these papers to try to have a positive outlook – don’t give up, don’t let this consume you, understand your illness or the diagnosis, but you’ve got to work at it.” | |
Patient 10: “I think you shouldn’t take it for granted that if a person is ill, they don’t want to hear ‘worried’ or ‘days,’ ‘months;’ they want the truth, but they want to have it put to them in positive ways.” | |
4. SICs should be common and routine, not extraordinary | |
All clinicians should be comfortable having SICs with patients | Oncology clinician 4: “Trying to adopt a more uniform approach…would be a great place to start.” |
Oncology clinician 7: “Universal application across the provider group.” | |
Patient 6: “You have to portray when you talk to somebody about it, this is very scary to me because you’re talking about all this right now and I’m trying to get better and trying to go into remission and all that. But it needs to be portrayed as in the event that, rather than you need to do this now, because.” | |
Patient 8: “Not at the end, when a person is so sick that they can’t speak. When they’re more healthy than down the road when they might not be able to answer those questions that should be done early on.” | |
Palliative care clinician 4: “When patients are getting roomed, part of rooming them is the nurse checks whether they have a health care proxy on file, and we’ll flag anyone who doesn’t have one. Or a MOLST on file, and it flags people who don’t have one. Finding ways to routinely bring to the attention of the person that something hasn’t gotten done or needs to be done.” | |
Palliative care clinician 6: “If it’s part of our culture and part of our workflow to know what matters most to the patient, every visit every time, then the stuff that’s already been done doesn’t get missed. But in our system, we do have a pretty standard way to document and track ACP. Again, it’s just a matter of, do you bother to access it? Do you know what’s there?” | |
Palliative care clinician 7: “Even with a guide like this, I think it would be hard, but I’m thinking about more of the medical oncologists. This should not be a specialty skill. This should be a general skill that everybody has, talking about ACP and goals. It shouldn’t be special. It should just be good care, not special care.” | |
Patients want their oncologist to lead their SIC | Patient 13: “The doctor would be the one because he has all the facts, and he has the background and expertise. I prefer a doctor that is going to be very direct with you about it and on the other side is not going to make you feel bad about having to do it.” |
MOLST, medical order for life-sustaining treatment.
SICs can be conducted via telehealth
Telehealth may increase patient comfort
Oncology clinicians felt that having SICs via telehealth might provide patients with the comfort of being at home, in an environment familiar to them. In addition, telehealth conversations would allow patients to have more family members present for support during a SIC.
Palliative care clinicians reported that telehealth SICs could be particularly helpful for weaker and more symptomatic patients.
Patients echoed the oncology and palliative care clinicians’ sentiment regarding telehealth-based SICs. Some patients explained that the telehealth option eased their worries regarding going out in public with a leukemia diagnosis.
Telehealth may make interpretation of body language challenging
Although participants in the study were optimistic about telehealth, they identified challenges to having SICs via this platform. Oncology clinicians found it challenging to see the entire person while using telehealth, and therefore it may be more difficult to respond to patients’ unspoken emotions and/or body language. Oncology clinicians emphasized that telehealth with video, as opposed to just phone audio, helps combat this challenge.
Palliative care clinicians also found body language was more difficult to interpret via telehealth. They were also worried about navigating and balancing the opinions of multiple loved ones who might be participating in a telehealth visit.
Patients were also worried about interpreting body language and recalled previous telehealth experiences in which people interrupted or spoke over each other when communicating. Some patients were concerned that they might misinterpret the body language of their clinician if they looked away from the camera and/or seemed preoccupied by something other than the conversation.
Older patients have limited experience with technology but are willing and able to learn
Patients’ current experience with technology is limited
Oncology clinicians emphasized that their older patients with AML or MDS were often not familiar with using technology and might find telehealth to be logistically challenging.
Palliative care physicians also thought that older patients, specifically, may have more difficulty troubleshooting technological difficulties during a telehealth visit. Furthermore, they were concerned that older patients, who are more likely to have hearing impairments, may have difficulty understanding the clinician’s voice via telehealth, especially when video is lacking.
Patients are willing to learn how to use telehealth
The patients in our study had limited experience with using telehealth, and many reported infrequent computer use. Some patients had used telehealth to meet with their primary care physicians during the COVID-19 pandemic for routine follow-up appointments. Patients were concerned that they would not be able to figure out how to access a camera for a telehealth visit. Nevertheless, patients in this study generally were willing to participate in a telehealth ACP visit and believed that they would be able to use telehealth successfully after learning how to use the technology. Specifically, 12 of 15 patients (80%) reported that they would be willing to participate in a telehealth ACP visit; 2 of 12 patients (13%) stated that they would prefer an in-person visit and 1 patient (7%) stated that they would participate in telehealth depending on their health status at the time of visit.
Patients feel that SICs will help them understand their AML or MDS diagnosis and prognosis better
Patients should be prepared to have an SIC
Oncology clinicians highlighted the importance of preparing their patients for an SIC. They suggested that providing the patient preparation letter from the SICP before the SIC visit was ideal, to allow the patient to adequately prepare to discuss their preferences and values.
Patients echoed the oncologists and stressed that it was important for them to have time to prepare for their SIC. Many patients said the patient preparation letter in the SICP would be helpful to them.
Patients emphasized their desire to understand their diagnosis (including course of illness and prognosis) of AML or MDS and felt that a SIC would be beneficial to their care.
Patients reported that additional education on their diagnosis and prognosis would be helpful but did not want to be scared by their clinician. Many patients recalled feeling confused when they received their diagnosis. They would have liked a SIC to better understand their diagnosis but recommended that the conversation be adaptable to each individual patient’s needs.
Positivity is important when communicating with patients about their illness
Oncology clinicians highlighted the challenge that they face when communicating information to patients about diagnosis and prognosis while simultaneously trying not to take away hope. Clinicians did not want their relationship with patients to be negatively affected by the SIC and wanted to continue to be someone that the patient looked forward to seeing. They added that this situation is particularly difficult to navigate in the setting of AML and MDS, in which the diagnoses are often very unpredictable, and older patients, in particular, are at high risk of rapid decline.
Patients identified hope and positivity as their driving force to navigate a new and unfamiliar diagnosis. They stressed the importance of being educated early about their prognosis without completely taking away the hope that helped them to move forward.
SICs should be common and routine, not extraordinary
All clinicians should be comfortable having SICs with patients
Palliative care clinicians reported that they receive consults to have SICs with patients. Although these conversations are frequently conducted by palliative care clinicians, it is important that all medical specialties be trained to have SICs with patients. They believed that SICs should be a routine part of hospital care, in which clinicians of various medical specialties should be trained to conduct, especially in the field of oncology because prognosis is typically poor for these patients.
Palliative care clinicians suggested that routine elicitation of patient values (in all medical settings) will make SICs less daunting for all patients, not just for those with a hematologic malignancy such as AML or MDS.
Patients want their oncologist to lead their serious illness discussion
Patients stated that they wanted their oncology clinicians to be trained to have SICs with them. They believed that these discussions would be best led by their primary treating oncologist who could speak about their disease status/prognosis, treatment options and side effects, and personal priorities/family values. Specifically, 11 of 15 patients (73%) stated that they would like their oncologist to be at their ACP visits; 3 patients (20%) did not specify whether they would prefer their oncologist at their ACP visit, and 1 patient (7%) specified that they would want to have an ACP conversation with their family, as opposed to a physician.
Discussion
We evaluated and adapted the SICP for delivery via telehealth to older patients with AML and MDS. Four major qualitative themes emerged from our data: (1) SICs can be conducted via telehealth, (2) older patients have limited experience using technology but are willing and able to learn, (3) patients feel that SICs will help them understand their AML or MDS diagnosis and prognosis better, and (4) SICs should be common and routine, not extraordinary.
We found that telehealth-based SICs may provide patients with the comfort of a familiar environment but run the risk of making interpretation of body language a challenge. Oncology clinicians in a previous study noted the convenience and increased access to care provided by telehealth but were similarly concerned with the ability to comfort patients in a virtual setting.23 Patients with cancer also appreciated the convenience of telehealth; some reported that they preferred to receive serious or bad news virtually.24 These patients felt that telehealth allowed more privacy, more space to process serious news, and additional family comfort (which is not available in an in-person setting).24 Although interpretation of body language remains a challenge with telehealth, having SICs via telehealth might also provide patients with a safe space to process their emotions with a larger support system. Nonetheless, clinicians should elicit patient preferences for having ACP discussions via telehealth vs in-person. Although the majority of patients in this study would be willing to have an ACP discussion virtually, this may not be the case for all individuals.
Oncology clinicians, palliative care clinicians, and patients in our study were concerned about the logistics of delivering care for older patients via telehealth. Technological issues, including poor Internet connection and lack of universal access to technology, are commonly reported as a barrier to telehealth.25 Nonetheless, patients in our study would be willing to use telehealth for a SIC, increasing the likelihood of successful use. Telehealth has provided benefits to older patients during COVID-19, including increased timeliness of care, enhanced communication with caregivers, and reduced travel burden.26 Previous research identified predictors for older adults’ success with telemedicine, some of which include perceived usefulness, effort expectancy, and physicians’ opinion.27 By delivering our adapted SICP via telehealth, we may increase access and frequency of SICs for older adults with hematologic malignancy.
Patients in this study emphasized their desire to fully understand their AML or MDS diagnosis and prognosis, and identified SICs led by their oncologist as a mechanism to help accomplish this. Patients stressed that these conversations would be most effective if discussed with hope and positivity even in the context of poor prognosis. This could be done by emphasizing what can be done, exploring realistic goals, and discussing day-to-day living.28 Research focusing on communicating prognosis to patients with cancer found that patients prefer a honest and clear presentation of prognosis and prefer clinicians to encourage hope and a sense of control in the conversation.29 A previous study demonstrated that the receipt of adequate diagnostic and prognostic information facilitated better patient-clinician relationships in 84% of patients.30 Prognostic discussions are not harmful to the patient-physician relationship and may actually strengthen the therapeutic alliance between a patient and their clinician.31 Older patients with AML or MDS want to have SICs with their oncologists, and this may lead to better patient understanding of diagnoses and patient-care team relationships. Therefore, our findings support the need for the development of palliative care interventions to be delivered by the oncology team for patients with hematologic malignancies.
SICs should take place in all medical specialties, especially oncology. Palliative care clinicians in this study suggested routine conversations for patients with hematologic malignancy. Since the original SICP randomized controlled trial, studies have implemented the SICP in clinical practice.32 In an outpatient oncology clinic at the Tom Baker Cancer Centre in Canada, implementation led to increased documentation of SICs at postintervention and documentation of 93% of conversations in the electronic medical record.32,33 At the Abramson Cancer Center in Pennsylvania, the majority of patients (90%) reported that the SIC was worthwhile, with 55% reporting that the conversation increased their understanding of their future health, 42% reporting increased sense of control over future medical decisions, 58% reporting increased closeness with their physician, and 42% reporting greater hopefulness about quality of life.32,34 Routine implementation of the SICP for older patients with AML or MDS may lead to increased SIC documentation, improvement in patient knowledge, and may promote patient hope and positivity. A single-arm pilot study is currently ongoing to evaluate the feasibility of the SICP for older patients with AML or MDS (clinicaltrials.gov identifier: NCT04745676).
Our study has strengths. Firstly, we included perspectives from a variety of stakeholders including older patients with AML or MDS, their caregivers, oncology clinicians, and palliative care clinicians. Secondly, we adapted the SICP for the vulnerable population of older patients with AML or MDS. In addition, this patient population is underrepresented in clinical trials. Our study has limitations. Firstly, as a single-center qualitative study at a large academic center, our results may not be widely generalizable. Secondly, our patient/caregiver population comprised largely White and non-Hispanic patients with high health literacy and may not be generalizable to minority populations. Additional studies testing these materials in a diverse population is warranted. Thirdly, because caregiver enrollment was based on availability, thematic saturation for the caregiver group was not reached. Nonetheless, it is valuable to include caregivers’ perspectives because they play an important role in patient care.
In conclusion, we found that the SICP may provide the opportunity for older patients with AML or MDS to share their personal values with their care team early in the course of their disease. The adapted SICP may facilitate earlier ACP discussions and allow oncologists to tailor care to what matters most to the patient, thereby improving patient outcomes.
Acknowledgments
The authors thank the Cancer and Aging Research Group and the Stakeholders for Care in Oncology and Research for our Elders Board (SCOREboard) who provided feedback. The authors thank Susan Rosenthal for her editorial assistance.
This work was supported by the National Cancer Institute at the National Institutes of Health (UG1CA189961; R00CA237744 [K.P.L.]), the National Institute of Aging at the National Institutes of Health (R33AG059206; K02AG062745 [B.K.]), Conquer Cancer American Society of Clinical Oncology and Walther Cancer Foundation Career Development Award (K.P.L.), the Wilmot Research Fellowship Award (K.P.L.), and the American Society of Hematology HONORS Award (M.L.). H.D.K. is supported by the National Institutes of Health/National Institute on Aging under Award #R33AG059206.
The content of this report is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Authorship
Contribution: M.L. and K.P.L. conceptualized and designed the study, performed data collection, data analysis and interpretation, wrote the manuscript, and approved the final version; C.S. conceptualized and designed the study, performed data collection, data analysis and interpretation, and approved the final version of the manuscript; J.H.M., S.N., R.B., T.C., and H.D.K. conceptualized and designed the study and approved the final version of the manuscript; E.W. performed data collection and analysis; J.L., E.H., K.O., A.B., and M.F. approved the final version of the manuscript; and B.K. conceptualized and designed the study and approved the final version of the manuscript.
Conflict-of-interest disclosure: K.P.L. has served as a consultant to Pfizer and Seattle Genetics and has received honoraria from Pfizer. The remaining authors declare no competing financial interests.
Correspondence: Kah Poh Loh, Division of Hematology/Oncology, Department of Medicine, James P. Wilmot Cancer Center, 601 Elmwood Ave, Box 704, Rochester, NY 14642; e-mail: [email protected].
References
Author notes
Data are available on request from the corresponding author, Kah Poh Loh ([email protected]) or first author, Marissa LoCastro ([email protected]).
The full-text version of this article contains a data supplement.