Bereaved Family More Likely to Report “Too Little” Care than “Too Much” Care at the End of Life

Abstract

Background:

An often-stated concern is that dying persons receive too much aggressive medical care.

Objective:

Examine next-of-kin perceptions of the amount of medical care received in the last month of life.

Design:

Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents.

Subjects:

Nontraumatic deaths 18 years and older in San Francisco Bay area.

Measure:

The survey asked: “During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?” Additionally, surveys examined 18 measures of quality of care in the last month of life, reporting concerns or unmet needs with staff communication, symptom management, emotional support, physician communication, treating the patient with dignity, respecting a person's culture, spiritual support, and providing timely help after hours.

Results:

Of the 623 survey respondents, 16.9% reported their loved one received “too little” care while only 1.4% reported “too much.” Likelihood of reporting too little medical care did not differ by age, gender, or being insured by Medicaid only. Respondents who reported “too little” compared with those that stated the “right amount” reported higher unmet needs for symptom palliation, physician communication concerns, with other important opportunities to improve the quality of care. Among the 17 in-depth interviews of those indicating “too little” care on the structured survey, the predominant concern (n = 10) was inadequate symptom management.

Conclusion:

While the majority of respondents indicated their loved one received the right amount of medical care at the end of life, a notable minority (one in six) indicated that their loved one received too little care.

Introduction

The lay press often states in fear provoking headlines that Americans are receiving “too much” aggressive care at the end of life with headlines, such as “The U.S. still gives too many patients too much end-of-life care.”¹ A debate has occurred over the “high costs of dying”² with some noting that dying is often marred by costly intensive care unit (ICU) and hospital care that represents “waste in the present system.”³ These judgments that persons receive “too much” care are based on retrospective studies of decedents of health care utilization.^4,5 The use of retrospective cohort studies of health care utilization has been debated.^6,7 Evidence from both randomized clinical trials and observational studies suggests that palliative care can reduce health care costs.⁸ Yet, no study to date has asked next of kin, usually a close family member or close friend, whether they believed that their loved one received “too much” versus “too little” care in the last months of life.

Three national demonstration programs^9–11 that are either in progress or soon beginning are aimed at testing new payment models and benefits to improve the quality of care and reduce health care costs at the end of life. Key to each of these models is enhanced shared decision making and advance care planning, which can result in dying persons and their family receiving palliative care at an earlier time point. This may help in avoiding expensive terminal hospitalizations and ICU care in the last month of life. Under traditional Medicare or “fee-for-service,” financial incentives may result in persons receiving hospitalizations, ICU stays, and invasive mechanical ventilation that may be contrary to patients' informed preferences and their likely outcomes of care.

Payment policy that focuses on value-based incentives may result in improved person- and family-centered medical care at the close of life that either is cost neutral or saves money. A fundamental premise of these payment policy changes is that persons receive “too much” aggressive care in the last month of life. In this study, a mortality follow-back survey was conducted in a market with high Medicare Advantage (MA) penetration to examine bereaved family members' or friends' perceptions of the amount and quality of medical care that their family member or friend received in the last months of life

Materials and Methods

Design

A mortality follow-back survey was conducted in the nine counties surrounding San Francisco as part of an effort to document opportunities to improve care at the close of life. Our goal was to sample deaths of chronic progressive illnesses; therefore, persons who died from accidents, suicide, or murder, whose manner of death was undetermined, and those who were pregnant at the time of death, or under the age of 18 were excluded.

Surveys were mailed to the next of kin or informant listed on the death certificate. If an informant did not respond after a second mailing, initially, attempts were made to contact the person listed as the informant through phone. However, as most informants did not have listed phone numbers, telephone follow-up was suspended and a second survey was mailed to all nonresponders. The survey was available in English, Spanish, and Chinese (a translation understandable to both Mandarin and Cantonese speakers). For decedents of Chinese or Hispanic ethnicity, and whose informant lived in zip codes with high rates of Spanish- or Chinese-speaking individuals, surveys were mailed in English and Spanish or Chinese, respectively.

Twenty respondents were excluded from the analysis because they stated that they were “not at all” familiar with the decedent's condition in the last month of life. Surveys were conducted about 9 months after the patient's death (ranging from 139 to 459 days with a median of 291 days after the death of the family member or close friend).

The final item in the survey asked if respondents would be willing to participate in an additional in-depth interview by phone. Among persons who indicated they would be willing to participate in this interview, respondents were sampled by place of death (home, nursing home, and hospital) and by those who stated that medical care was not consistent with the dying person's wishes for care. Of those surveyed, 43.5% indicated that they would be willing to be interviewed. Among those respondents who indicated they were willing to be contacted, 92 cases were sampled. Four cases were eliminated because their survey responses indicated that they were not involved in the decedent's medical care.

At the time of completing the fielding of in-depth interviews, 8 persons refused participation in the in-depth interviews when we approached them to schedule an interview (despite stating on the survey they were willing to participate), 3 were unable to be located, and 28 cases were still in process. A total of 49 in-depth interviews were completed to learn more about the end-of-life experiences of the decedent and the decedent's family. Of the completed interviews, 17 interviewees had indicated on the survey that their family member or close friend received “too little” care. The research project was approved by both the RAND Institutional Review Board (IRB) and the State of California IRB.

The overall survey response rate among eligible respondents was 21%. Response rates were lowest among next of kin of decedents who died in hospitals, and highest for the informants of decedents who died in a nursing home or long-term care facility (18.2% vs. 26.1%, p < 0.05). The response rate for those dying at home was 22.2%; the response rate for those dying in other locations was 23.0%. Informants of white decedents were more likely to respond than informants of black and Asian decedents (25.3% vs. 15.4% and 16.9%, respectively; p ≤ 0.05). Response rates were lower among those for whom the death certificate noted were of Hispanic heritage as compared with white non-Hispanic decedents (15.1% vs. 27.5%, p ≤ 0.05). Response rates were higher when the decedent was older (90+ response rate of 28.4% compared with 13.4% for those younger than 65, p ≤ 0.05). There was no difference in response rate by gender of the decedent.

Main outcome measure and survey content

The focus of this analysis was on a survey item that asked: “During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?” The survey was divided into items that focused on the last month of life overall, and the quality of care during a stay in a hospital, nursing home, assisted living facility, or while receiving hospice services or home health, in which the decedent received two or more days of care. In this analysis, we focused on survey items from prevalent places of care (i.e., hospital and nursing home) and use of hospice services. Survey items were based on Teno et al.'s conceptualization of high-quality person- and family-centered care,¹² as well as items from the Consumer Assessment of Health Providers and Systems (CAHPS) Hospice Survey.¹³

Survey items were aligned with the palliative care domains of the National Consensus Project Guidelines for Quality Palliative Care. In this article, we focused on quality care domains of staff communication and symptom management. A first domain focused on physician communication regarding prognosis and whether there was a problem understanding a physician's explanation of treatment, while three items in a second domain focused on whether the decedent received their desired level of physical comfort and emotional support. For persons who experienced pain, dyspnea, or emotional distress, an unmet need was defined as the respondent reporting that the decedent did not receive as much help as needed with that symptom.

A third domain focused on staff communication and whether the staff listened carefully and how often the staff kept the respondent informed about the patient's condition. Survey items in the last month focused on respecting cultural and religious/spiritual traditions, getting needed help on the weekend and after hours, being educated on what to expect while the patient was dying, treating the patient with dignity and respect, and emotional support before and after the death of their family member or close friend. For each of these items, we followed the top-box scoring convention of the CAHPS Hospice Survey. In addition to these quality measures, the survey collected sociodemographic information about the decedent and respondent. Cause of death and site of death were abstracted from the death certificates.

In-depth interviews

For 49 persons, an in-depth interview was conducted to gather next-of-kin perceptions around the decedent's last month of life with questions, including: (1) What went well in the last months of life? and (2) What could have been improved? Probes focused on communication and decision making with health care providers, emotional support, health care transitions, and palliation of symptoms, such as pain, shortness of breath, and anxiety, in the last months of life. In this study, we examined the narratives of 17 respondents who reported on the survey that the decedent received “too little” care.

Analyses

Analyses of survey response data were performed with Stata 15.0 using weights to account for the complex sampling design. Chi-square tests were used to examine the associations of sociodemographic characteristics of the decedent and respondent's report of receiving “too little” medical care in the last months of life. A multivariate model predicting the response of “too little” medical care examined the association with age, gender, race, education of the respondent, cause of death, place of death, and functional status measured by mobility in the last month of life.

Two analyses were undertaken to understand the respondents' concerns when they said “too little” medical care. First, we examined the univariate association of the five key quality measures of the survey with the survey response of receiving “too little” medical care compared with persons who stated the decedent received the right amount of medical care. Second, a qualitative content analysis was conducted on the 17 narratives to identify the main concern of narratives where the respondents stated they received “too little” medical care. Two reviewers (J.M.T., J.N.B.) reviewed transcripts of each narrative for the main concerns based on responses to the interview on what could have been improved in the last month of life.

Results

Out of 623 respondents, 100 (weighted percentage 16.9%) believed the decedent received “too little” care, with 81.7% stating their loved one received the “right amount” of medical care. Only 13 respondents stated they received “too much” medical care (1.4%). Table 1 describes the overall sample and respondents who reported “too little” or “right amount.” A multivariate model examined whether there were sociodemographic differences by race, gender, relationship of the respondent to decedent, causes of death, site of death, insurance, and functional trajectory measured by mobility loss in the last year of life. While there were some differences by cause of death and education of the respondent, there were no differences by age, gender, site of death, insurance type, or by functional trajectory in the last year of life with the perception of receiving too little care in the last month of life (Table 1).

Table 1.

Characteristics of “Too Little” versus “Right Amount of Care”

	Too little care (n = 100, weighted n = 1043)	Right amount of care (n = 484, weighted n = 5031)	Multivariate odds ratio for predicting too little care (95% CI)
Female	51.4	51.8	1.01 (0.52–1.96)
Respondent relation to decedent
Spouse	24.0	33.5	Ref.
Parents/grandparents	47.4	44.8	2.16 (0.91–5.14)
Sister/brother	13.1	10.4	1.77 (0.56–5.63)
Friend/other	4.7	4.3	1.51 (0.42–5.46)
Aunt/uncle	10.8	7.4	3.40 (1.04–11.1)
Respondent education
High school	4.6	11.6	Ref.
No high school	2.9	6.3	1.80 (0.20–16.2)
Some college	35.7	24.6	5.43 (1.47–20.1)
Four-year college	19.0	24.6	3.24 (0.87–12.2)
More than four-year college	32.2	30.4	4.54 (1.27–16.2)
Race
White	62.4	62.5	Ref.
Black	10.8	6.1	1.39 (0.42–4.55)
Asian	10.8	18.0	0.64 (0.22–1.91)
Hispanic	12.1	11.2	1.77 (0.61–5.18)
Cause of death^a
Alzheimer's/dementia	4.3	15.1	Ref.
Cancer	27.1	25.1	3.38 (0.87–13.2)
Cerebrovascular accident/stroke	5.2	6.9	2.41 (0.53–11.0)
CHF	5.6	2.3	10.3 (1.71–61.8)
Noninfectious respiratory disease	10.1	2.5	22.5 (3.75–134.5)
Other disease^b	28.8	20.1	4.32 (1.13–16.5)
Other heart disease	13.0	22.1	2.44 (0.63–9.42)
Parkinson's and other degenerative disease	1.3	2.3	2.44 (0.24–25.1)
Pneumonia and other infectious lung disease	4.6	3.5	4.64 (0.29–43.8)
Decedent age
65–69	6.5	8.4	Ref.
70–74	12.2	6.8	1.82 (0.41–8.10)
75–79	12.6	10.4	1.59 (0.41–6.20)
80–84	7.2	14.2	0.53 (0.13–2.14)
85–89	23.8	18.2	1.20 (0.33–4.37)
90+	17.7	29.0	0.49 (0.14–1.70)
<65	20.1	13.1	0.90 (0.20–4.12)
Insurance
Medicare	59.5	64.3	Ref.
Medicaid	14.2	7.0	0.43 (.16–1.2)
Dual	9.3	12.8	1.14 (0.39–3.4)
Private	8.0	18.2	2.51 (0.91–6.7)
Lost ability to walk across room
Never lost the ability	7.2	5.6	1.36 (040–4.7)
Less than one month	42.5	43.4	Ref.
Greater than one month and less than six months	26.5	21.6	1.26 (0.53–3.0)
Greater than six months	20.2	26.8	1.73 (.13–23. 2)
Place of death
Home	37.8	41.1	Ref.
Inpatient	28.5	25.8	0.44 (0.16–1.20)
NH	11.1	20.7	0.52 (0.20–1.33)
Other	22.6	12.4	1.97 (0.87–4.50)

Significantly different at the univariate level.

The “other” cause of death category included diseases like chronic kidney or liver disease, primary hypertension, type 2 diabetes, hyperlipidemia, and other diseases that were too low in frequency to report based on the data use agreement to use death certificate data.

CHF, congestive heart failure; CI, confidence interval; NH, nursing home.

Two exploratory analyses were conducted to better understand the response of “too little” medical care. First, we examined the association of quality measures with the response “too little” and “right amount.” Table 2 presents the rate of unmet needs and concerns with the quality of care for those who indicated that the decedent received “too little” care and those who indicated that the decedent received the “right amount” of care. While the rate of unmet needs for symptom palliation was high even among respondents who stated their family member or close friend received the right amount of care, the proportion of unmet needs was substantially higher among those respondents who reported “too little” medical care. Even among those receiving hospice services, 80.0% of those reporting “too little” care reported unmet needs for pain management compared with 18.8% among those respondents who reported the “right amount” of care.

Table 2.

Staff Communication and Unmet Needs for Symptom Management

Quality of care indicator	Too little care (n = 100, weighted n = 1043)			Right amount of care (n = 484, weighted n = 5031)
Quality of care indicator	Hospice (n = 45, weighted n = 535.5)	Hospital (n = 57, weighted n = 594.3	NH (n = 34, weighted n = 265.9)	Hospice (n = 308, weighted n = 3085)	Hospital (n = 215, weighted n = 2570)	NH (94, weighted n = 1121)
Staff communication (%)
Staff did not always listen carefully	59.2^*	66.5^*	90.9^*	29.2^*	40.9^*	53.1^*
Staff did not always keep family informed about patient's condition	57.6^*	71.3^*	78.0	34.9^*	37.3^*	58.1
Symptom management (%)
Unmet needs for pain management	81.0^*	63.7^*	90.9^*	19.4^*	29.7^*	46.7
Unmet needs for dyspnea management	54.5	51.8	93.2	32.6	29.8	57.5
Unmet needs for anxiety/depression management	71.4	84.7^*	100^*	51.5	61.6^*	73.7

p ≤ 0.05 for the comparison of response “too little” medical care vs. “right amount” medical care by setting of care.

For decedents that were hospitalized, the proportion of concerns with physician communication about prognosis and medical treatment was nearly double that reported by respondents who stated they had the “right amount” of care (Fig. 1). Table 3 examines concerns in the last month of life, contrasting those that stated “too little” versus “right amount” of medical care. Respondents noted concerns with religious/spiritual beliefs not always being respected (53.4% vs. 19.1%, p ≤ 0.05) and cultural transitions not always being respected (57.6% vs. 19.1%, p ≤ 0.05). In addition to these two areas of concern, there was a similar pattern of reported concerns being significantly higher in respondents who stated they received “too little” care, which indicates important opportunities to improve medical care in the last month of life.

FIG. 1.

Reports the concerns for communication about prognosis and medical treatment among the 87.1% of hospitalized decedents whose family member or close friend reported “too little” medical care and spoke with a physician compared with 93.5% of respondents who reported the “right amount” of medical care. All differences significant at p ≤ 0.05.

Table 3.

Quality of Care in the Last Month among Respondents That Stated “Too Little” or “Right Amount” of Medical Care

Quality of care indicator (%)	Too little care (n = 100, weighted n = 1043)	Right amount of care (n = 484, weighted n = 5031)
Cultural traditions not always respected	57.6^*	19.1^*
Religious/spiritual beliefs not always respected	53.4^*	20.3^*
Not enough support for religious/spiritual beliefs from staff	49.4^*	9.6^*
Did not always get needed help on weekends/holidays	97.6^*	43.5^*
Family was not always educated on what to expect while the patient was dying in the last month of life	74.0^*	30.9^*
Patient not always treated with dignity and respect	72.6^*	17.4^*
Emotional support not provided in weeks after family members death	67.4^*	22.4^*

p ≤ 0.05.

Out of 49 in-depth interviews, a second exploratory analysis examined 17 narratives of persons who stated in the structured interview that their loved one received “too little” care. These results are presented in Table 4. In 10 of these 17 cases of “too little” care, the main concern was symptom palliation. For example, interviewees described concerns with timely delivery of opiates from the pharmacy and difficulty getting an opiate prescription filled for chronic pain. The following narrative reported the failure of medical technicians at an assisted living facility to administer opiates as prescribed to an 85-year-old dementia patient:

Table 4.

Narratives of Respondents Who Stated Their Family Member Received “Too Little” Care

Case description	Main concern	Supporting quotation	Potential mechanism
An 85-year-old Chinese male died in the hospital from CHF after transfer from ALF.	In ALF, the patient did not receive correct dosage of diuretic.	“And she said, no, they had not been giving him the extra Lasix. And this is like eight days into when they should have been giving him the extra Lasix, right. And I was like, are you kidding me. Like I'm like I organized with your boss. Like this shouldn't- and he was on vacation.”	The regular med-tech was on vacation and the person filling in did not administer medications correctly.
A 90-year-old white female with ESRD on hospice falls, injuring her left arm with poor symptom control.	Patient with POLST but with fall and injury to left arm that respondent believed did not receive appropriate symptom palliation.	“Um. I just wish that they would, would- all the medication they were giving her, and she was still in pain that maybe the hospice people could have said um you know let's open up the- what do you call that, the uh, uh, this thing on her arm. Cause they, they uh bandaged her.”	Respondent believed that health care provider did not provide appropriate care to a broken arm because the patient was on hospice. Hospice did not provide adequate symptom palliation.
A 90-year-old white female with CHF and emphysema dies in an inpatient palliative care unit.	Respondent requested more help in providing care at home.	“I would have liked to have more support. I would have liked to have more, you know, whatever the, what are the seven things that you have to be able to do? She didn't do bathing well and she didn't wash her hair well, and, um, she didn't do, um, she, when she went to the bathroom, she could go to the bathroom, but she ended up wearing Depends, and when I got there, there were Depends everywhere.”	Concern with financing of custodial care.
A 95-year-old white female with dementia died in NH only after multiple hospitalizations for UTI.	Poor physician communication and stopping opiates that resulted in withdrawal in the hospital.	“The other piece of it was the pain management and that's—I thought they didn't do a very good job …You know I just think that the continuity of different doctors, different nurses, nobody listening … She was hallucinating because of two things, the withdrawal from the opioid and strong antibiotics …”	Withdrawal from opiates and infection resulting in hallucinations that were distressing to the respondent.
A 75-year-old Hispanic transgender women died in acute care hospital of pneumonia, had history of Hep-C and liver cancer.	Respondent had several concerns: (1) homophobia from health care providers; (2) poor management of patients' pain; and (3) not getting treatment for Hep C.	“You know, like I said, especially with her, her like pain management and, and things like that. …“And you know they put her through the 13 stations of the cross. Um even to get her medication, that was another thing. You know, they would, they would hassle her with that or she would have to fight almost like, it was ridiculous what happened. And she would have to fight for her medication. She was in a lot of pain”	Patient with chronic pain who had difficulty getting proscriptions for opiates filled.
An 85-year-old white female with dementia who in the last month of life was in ALF, NH, and hospital—she had multiple falls with repeat ER visits until hospitalized post fall with cardiac event that resulted in CHF—discharge on hospice but told that she could only use on hospice program with ALF.	There were two concerns. First hospice did not show up on time and second, the med med-tech in the ALF refuse to administer opiates as ordered.	“… And the worst part is that they come with their religious beliefs. A couple of them would shoot to administer morphine to my mother. They controlled it in their pharmacy dispensary so we couldn't ever take control of that. But somebody having to be on duty, if it was in the middle of the night and my mother needed morphine. And they disagreed. They said you're basically killing your mother, you're taking your mother's life.”	Poor symptom control secondary to med-techs that did not follow physician orders.
A 90-year-old white female who died in the hospital of CHF after transfer from NH.	NH did not recognize worsening CHF and provide appropriate treatment that resulted in hospitalization in which the patient died.	“She went to the nursing home instead … It was that her heart was failing, but we, they [the doctors] didn't want to take any action on it ‘…’ They just kept wrapping her legs up and that then caused other problems, got infection into wounds, she got an antibiotic-resistant urinary tract infection. The other thing I wanted to comment about the nursing home is that they are so severely understaffed. I think the highest ratio you're supposed to have of patients is even in low risk situations is something like 8 to 1, 4 to 1. They had them running, at times, 14 and 20 to 1. So, severely understaffed.”	Staffing in NH impacted the ability of the staff to monitor the patient.
A 75-year-old white male who died from cancer while in the NH with hospice services.	Poor symptom management: pain, nausea, dyspnea.	“But in the hospice, in the convalescence home, they were understaffed in my opinion, I think they all had the best of intentions and simply were overwhelmed with the patient load … if the hospice staff was there more often. … They could have been more on top of his breathing and pain and nausea management. I don't have any knowledge of how often, under the circumstances they thought was appropriate to be there. His death may, I'm not sure whether his death was mis-mis-mis-predicted, um, whether they had any understanding of when he might pass and, and how often they might come around at the time of his passing. During that time, that would have been the time to have more attention.”	NH staff did not provide adequate palliation secondary to staffing.
A 75-year-old white male who died from cancer in the hospital.	Poor symptom management: pain and thirst.	“One time they ordered it [pain medications] from the pharmacy, which is in the basement of the hospital. And hour after hour went by and it wasn't delivered. Hour after hour after hour and, and he's in pain, you know. And he was conscious until really an hour or two before he died. But, to not give painkillers to a dying man for hours and hours, and on more than one occasion is just … they have to they have to do something differently.”	Delayed delivery of pain medications from pharmacy.
An 85-year-old white female who died of heart disease in the hospital after transfer from ALF.	Poor pain management.	“She had a hard time getting pain medication. A rheumatologist that treated her severe daily chronic pain from arthritis would only give her X number of pills. You know how it is now, it is highly regulated. Well just the current trends, the changes in the national bureaucracy of pain administration. But when you're [AGE] and have chronic pain and you have to wait until X number of days to get your prescription refilled it is kind of cruel. And you know it just wasn't managed she just it wasn't treating the pain anymore. So that part was horrible.”	Change in opiate policy for chronic pain results in dying person receiving poor pain management.
Middle-aged white man who died in hospital from cancer.	Poor pain management.	“He suffered a lot at home, even though he was mobile, and he kept getting around but my problem with that period of time, I don't understand why it was his problem necessarily. There was no contact with anybody. “Hey doc, I'm about dying, I'm lying on the floor, writhing in pain.” There was no connection there, the hospital or the doctor, or whoever. The doctors were not following up with this. There was no monitoring what his condition was. There was no change in medicine, there was, for two, three weeks at a time, or more. I never understood that with my son and I don't know why he didn't object to it. But he, he just took it in the ear.”	Inadequate treatment of pain.
A 65-year-old white male who died of heart disease in the hospital with hospice services.	Poor pain management.	“The hospice nurse came in, did all the paperwork, did all of that, docs signed off. Fine. In that moment there became no nursing care from the staff for the next five days. … Its hospice. Who's not there. They're not there. They don't have nurses coming in from hospice taking care of the patients—they're just in the distance overseeing. Well. [PATIENT] didn't get a lot of good care at all. It was a constant daily push to get the hospital nursing staff to do any care at all. And the most abhorrent was when they started an IV morphine drip…it was infiltrated…for 16 hours. 16 hours! Course, I'd finally get angry. Because they knew. The nurses knew it was infiltrated. They admitted it. “Oh yeah, we'll get someone in.” No. Never did. “Oh, we gotta call hospice.” Why? Change the frickin’ IV! They wouldn't do it. It wasn't until we pushed and pushed and I was actually at the point of trying to talk to the director of nursing—who was never available the whole week I was there. Finally, they got somebody to come in, change the IV, and he was gone 20 minutes later.”	Lack of coordination between hospice and hospital staff resulted in poor symptom management.
An 85-year-old white female who died of cancer at home with hospice services after transfer hospital from a NH.	Poor physician communication.	“Uh, as far as I'm concerned her general doctor, should be taken out and shot. She never called her. She never came to talk to her. When she was for sure dying, that was the end of it, and I called her to talked to her, she said, what you really should do is talk to the oncologist. So, I made an appointment and my sister flew down and we both went in there with my mom, and the oncologist was, she was really young, and, but what she said—it's actually no excuse. My mother said, well—she goes, ‘All I want to know is when's this gonna end?’ And she says, ‘it's going to end when you die.’	Insensitive physician communication.
An 85-year-old white male that died of pneumonia in an acute care hospital.	Poor Physician communication.	“But they contacted me and said [PATIENT] was in the hospital with pneumonia. He'd had a short bout with it in May. I call the hospital, finally got through to them. I had to send them again [EMPHASIS] the papers for medical power of attorney which I think they had four sets of and plus I was next-of-kin and emergency contact. Right? Somebody should have called me, but I had to track them down. And I had a physician named [DOCTOR] who said to me, “your uncle is in total organ failure, he's unconscious, why don't we just let him die and rest in peace.” Or something like that. And I said, “no, wait a minute, that's not what the caregiver—his name is [CAREGIVER]—that's not what [CAREGIVER] said to me… Well, I don't know how ill he was when they brought him in. I'm not a physician. But within hours I spoke with him. So, he was not unconscious. And nor was he in total organ failure. Then, they put him on partial-code. My uncle was full-code. No one told me that. I found it out by accident.”	Insensitive physician communication.
A 70-year-old white female died from cancer at home.	Poor pain management.	It would have helped her to have a better pain management system and to perhaps give reasons other than cost and potential addiction. Why cant she have the drug? Well its expensive and potentially addictive. Its not what we needed to hear and what she needed to hear.	Refusal to change pain medication secondary to cost and fear of addiction in a person on hospice.
An 80-year-old black female died from cancer in a NH.	Too little care secondary to elder financial abuse. Concern was not with health care providers.	I think, had I had more money, or had she had the money, I definitely would have put her in a nicer place.	Elder financial abuse.
A 55-year-old Asian female died at home.	A fall resulted in laceration of her leg that hospice refused to allow treatment.	“Well, like one thing that happened was that she fell on the back staircase in the middle of the night, and it split her knee open, and the nurse who came said you know, “You need to get stitches.” But then, hospice wouldn't—the doctor wouldn't approve her getting stitches because it meant she would have to go to the hospital to get it done. So they never stitched up her knee. And for like the last, I don't know, it must have been maybe two or three months of her life she had this like huge gaping wound on her knee that they would just come and bandage, or yeah, occasionally they would come look at it and um, I don't, it just seemed unusual to me”	Mismanagement of wound.

ALF, assisted living facility; ER, emergency room; ESRD, end stage renal disease; NH, nursing home; POLST, Physician Orders for Life-Sustaining Treatment; UTI, urinary tract infection.

And the worst part is that they [medical technicians] come with their religious beliefs … They controlled it (i.e., morphine) in their pharmacy dispensary so we couldn't ever take control of that. But somebody having to be on duty, if it was in the middle of the night and my mother needed morphine. And they disagreed. They said “you're basically killing your mother, you're taking your mother's life.”

In two cases, the concern was monitoring and administration of medications for the management of congestive heart failure. Both of these cases involved persons residing in an assisted living facility that used medical technicians to administer medications. An 85-year-old male was transferred from an assisted living facility to the hospital because of the failure to administer treatment for his congestive heart failure.

… And she said, no, they had not been giving him the extra lasix. And this is eight days into when they should have been giving him the extra lasix, right. And I was like, are you kidding me?

Bereaved family members' narratives demonstrated unmet needs around pain control in the last month of life (even among decedents who had been on hospice), with several family members noting that their loved ones suffered in pain as a result of not enough attention to or management for their pain as well as other related symptoms, including shortness of breath and anxiety.

Discussion

An assumption often stated in the lay press is that Americans are getting “too much” care at the end of life and that care received does not reflect their preferences for care. Contrary to expectations, nearly one in six respondents stated that their family member or close friend received “too little” medical care. This is not “too little” ICU care or hospitalizations, but rather “too little” in that their family member or close friend did not receive their desired symptom palliation or enough communication. Only 1.4% reported they received “too much” medical care. Among respondents who stated they received “too little” medical care, the overwhelming concern was adequate symptom palliation, even among those who received hospice care.

The focus of this study was on deaths that occurred in the nine counties surrounding San Francisco as part of a baseline audit for a private foundation. Unlike the rest of the United States, the penetration of MA in this area is high. In 2015, 43% of decedents in these nine counties were cared for by a MA plan compared with a national rate of 23%. MA plans have more flexibility to provide high-quality care to seriously ill populations.¹⁴ Even in a region with high MA penetration, opportunities to improve quality of end-of-life care exist. Current U.S. payment policy is transitioning from fee-for-service to paying for value. Innovation is needed, such as current efforts of the Center for Medicare and Medicaid services to carve hospice into MA plans as planned under the demonstration program, “Value-Based Insurance Design demonstration for Medicare Advantage.”¹¹

Important limitations should be acknowledged. Even with mixed-mode survey administration, the response rate was only 21%. It is possible that a biased set of respondents with greater concerns chose to complete the survey. While this could potentially result in an overestimation of the proportions of persons with unmet needs or concerns, the narratives attest to the suffering of decedents and that the family or close friend's last memories of the death were marred by health care that did not provide high-quality care. Furthermore, this is a retrospective study with the respondent knowing that the person died, which could bias the respondent's memory of events. However, there are important advantages of this retrospective approach, including a clearly defined denominator. Persons listed as the next of kin or informant on the death certificate were interviewed at varying times after the death. However, previous research found moderate-to-high stability of response, even among those with changes in grief.¹⁵ Respondents in some survey items act as a proxy for the patient and, for other items, report on their own experience; the World Health Organization notes that palliative care involves the care for the dying person as well as their family or significant others. Furthermore, a review of the literature found that family respondents accurately report on many quality-of-care domains. Lastly, there are important limitations to this observational study owing to its nonexperimental design that only allows the reporting of associations, not causation.

Conclusion

A 2004 JAMA¹⁶ article found important opportunities to improve the U.S. experience of dying, concluding: “With the baby boom generation starting to reach retirement age, there is urgent need for improving end-of-life care in the United States.” This current study, completed nearly two decades after the 2004 JAMA study of person- and family-centered care at the last place of care, attests to the continued need for multifaceted and sustained interventions to improve the quality of care in the last month of life. New challenges since 2004 include the growth of assisted living facilities, as demonstrated by three narratives where respondents detail their concerns on the quality of care in those facilities (Table 4). Persistent poor quality of care of dying persons who spend time in nursing homes in the last month of life is reported as found in the 2004 study.

Between 2000 and 2020, there has been striking growth of hospital-based palliative care teams and use of hospice services, although too often, these are only used in the last seven days of life. The words of next of kin describing the death of a middle age man from cancer is a resonate call for action:

… [He was} lying on the floor, writhing in pain. There was no connection there, the hospital or the doctor, or whoever. The doctors were not following up with this …

Footnotes

Acknowledgments

The authors thank the interviewers and staff of the RAND Corporation.

Funding Information

Funding for this survey was made by the Stupski Foundation.

Author Disclosure Statement

No competing financial interests exist.

References

Bedard

, Cohen

: The U.S. still gives too many patients too much end-of-life care. Center for Health Journalism, 2016.

Ginzberg

: The high costs of dying. Inquiry, 1980; 17:293–295.

Kroft

: The cost of dying: Patients' last two months of life cost Medicare $50 billion last year; is there a better way?. 60 Minutes, 2009.

Bekelman

, Halpern

, Blankart

, et al.: Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA, 2016; 315:272–283.

Wright

, Keating

, Ayanian

, et al.: Family perspectives on aggressive cancer care near the end of life. JAMA, 2016; 315:284–292.

Scitovsky

: “The high cost of dying”: What do the data show?. Milbank Mem Fund Q Health Soc, 1984; 62:591–608.

Bach

: A map to bad policy—Hospital efficiency measures in the Dartmouth Atlas. N Engl J Med, 2010; 362:569–573; discussion 574.

Smith

, Brick

, O'Hara

, Normand

: Evidence on the cost and cost-effectiveness of palliative care: A literature review. Palliat Med, 2014; 28:130–150.

Centers for Medicare & Medicaid Services: Medicare care choices model. https://innovation.cms.gov/innovation-models/medicare-care-choices 2020. (Last accessed April 27, 2020).

10.

Center for Medicare & Medicaid Services: Primary care first model options. https://innovation.cms.gov/innovation-models/primary-care-first-model-options 2020. (Last accessed April 27, 2020).

11.

Center for Medicare & Medicaid Services: Medicare advantage value-based insurance design model. https://innovation.cms.gov/innovation-models/vbid 2020. (Last accessed April 27, 2020).

12.

Teno

, Casey

, Welch

, Edgman-Levitan

: Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. J Pain Symptom Manage, 2001; 22:738–751.

13.

Anhang Price

, Stucky

, Parast

, et al.: Development of valid and reliable measures of patient and family experiences of hospice care for public reporting. J Palliat Med, 2018; 21:924–932.

14.

Silvers

, Fields

, Kytonen

, Meier

: Medicare advantage flexibility: Improving care for seriously ill beneficiaries. Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20180702.641853/full 2018. (Last accessed April 27, 2020).

15.

DiBiasio

, Clark

, Gozalo

, et al.: Timing of survey administration after hospice patient death: Stability of bereaved respondents. J Pain Symptom Manage, 2015; 50:17–27.

16.

Teno

, Clarridge

, Casey

, et al.: Family perspectives on end-of-life care at the last place of care. JAMA, 2004; 291:88–93.