Mar 242020
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)
Dr. Joanne Lynn

By Joanne Lynn

Within the next few weeks, the U.S. will experience a very large number of deaths from Covid-19. The evidence is now plain that these will mostly be persons over 60 years old, and many will be persons past 80 and persons already living with disabilities and illnesses associated with aging. Every one of us in that group should be making decisions about the desirability of hospitalization and ventilator support, yet no one is talking about making Covid-19 advance care plans. If a person chooses to turn down the hospital setting or the ICU care, whether for spiritual, pragmatic, or altruistic reasons, that person needs to be confident that symptom management for air hunger will be available. And our funeral homes, crematoria, and cemeteries need to be ready. Furthermore, separate from all those issues, the nation needs to be developing serologic testing for immunity, so we can tell who is immune and therefore able to return to work and visiting without the risk of infection from or spread of this virus.

Why are we not thinking ahead and preparing for these issues? This is the same problem we had in January, when it was already clear that this virus was so contagious that it would circle the globe. We are already way behind in dealing with today’s issues. Rather than being in the same position on near-future issues, we could deliberately get out ahead on these.

Every nursing home and assisted living facility should immediately move to get advance care plans for nearly all of their residents. These plans should be specific to the threat of Covid-19 in the context of the particular resident’s situation. Covid-19 in elderly and seriously ill persons mostly kills by respiratory failure, progressing over a few hours or days from a sensation of breathlessness to air hunger and suffocation. Only a minority of elderly persons who are put on ventilators survive to leave the hospital, and most have lost more functional ability from the deconditioning and struggle. Elders already living with eventually fatal illnesses and their families might make decisions to avoid all this and accept that a serious case of Covid-19 is very likely the end of their lives.

But someone has to ask them. Someone has to inform the elderly person or his or her surrogate decisionmakers and help them to understand their situation, and then to document their decisions, especially if they decide to go against the conventional pattern of going to the hospital or using a ventilator. These discussions are difficult, and the clinicians involved may find to be helpful. Families might resort to to find the language needed. Leaders on television need to be encouraging these discussions and decisions.

Nursing home and assisted living residents are at particular risk because we really have no way to prevent outbreaks in facilities. This virus has about a 6-day incubation period in which the infected person has no symptoms but is already capable of spreading the virus. Someone is bound to bring the virus into some facilities unknowingly. With so many residents who cannot cooperate fully with isolation due to dementia or delirium, the virus is very likely to spread. So, a focus on advance care planning for residents of nursing homes and assisted living centers is urgent and is also able to be implemented. Still, half of our population of seriously ill or disabled elderly people are not in facilities; they are being cared for at home by family. So, families need to have the same conversations and make these decisions.

One painful aspect of these discussions is that hospitalization and ventilator use may become unavailable to these elderly or ill persons if our facilities become overwhelmed. We don’t need to dwell on this aspect, of course, but we do need to acknowledge that a decision to pursue fully aggressive medical treatment depends upon those elements continuing to be available.

In addition, a person whose care plan is to stay on site and not to use the hospital, or who has no option to get hospitalization, needs to be able to rely upon good symptom management for respiratory distress. This requires supplementing oxygen and providing morphine (or another opioid). Many nursing homes and assisted living centers will have had little experience with supporting people dying with respiratory failure as the cause. Hospice and palliative care practitioners will have the needed experience of titrating medication to relieve air hunger while leaving the possibilities open that the person might survive, but they need morphine and personal protective equipment. Even so, they will be stretched to serve suddenly large numbers of infectious people dying of respiratory failure at home and in facilities. These clinicians need to be in the list of high priority providers and their services need to be acknowledged and valued by leadership.

Morticians, funeral directors, crematoria, and cemeteries will need to be prepared for a surge of deaths, including many out of the hospital. Again, leaders should acknowledge and value these services and help to make arrangements for their workforce and supplies.

Finally, we will soon have a substantial number of people who have had their Covid-19 infection and recovered. Nearly all will have rid themselves of the virus within a month. But most will be uncertain as to whether they are immune because they never had a definitive diagnostic test, either because their illness was mild or because the testing was unavailable. Persons who are immune become very valuable to the public. They can return to work, they can visit sick people, they can provide care – indeed, they can be the vanguard of a return toward normal. But they need to know that they are immune, as do their employers, patients, and family members. This calls for development of and deployment of serologic testing, so we can know who is still susceptible and who is immune. We don’t yet know how long immunity will last, and the evidence in related viruses is for it waning over a year or two. But in the current year, these people are especially valuable since they cannot be infected and cannot spread the virus (with ordinary hygiene). We need leaders to be calling for development of this testing and making plans for deploying it – perhaps first to health care workers.

The nation is watching the experience in Italy with some horror – but it is over there and not here. We are not actually dealing with the likelihood that some aspects of their experience will be here, in at least some parts of the nation, in the next months. Let’s get over our reticence. We will have a great many deaths. Many will be in nursing homes and assisted living centers and most will be among people who are growing old. When a person is likely to die if he or she gets this disease, we should at least be clear as to what treatment the person wants. If the person is dying without ventilator support, he or she should have treatment to prevent feeling suffocation. Bodies should be able to be removed and buried or cremated promptly. And we should be ready to test for immunity within the next month.

These things are foreseeable. It’s time for leaders to talk and to put plans in place. Let’s get ahead of this pandemic on these issues.

Mar 242015

By Elizabeth Blair, Victoria Walker and Anne Montgomery

Standing behind a podium in a Capitol Hill meeting room at the March 3 launch of a new congressional caucus aimed at increasing policy attention to family caregivers, Marianita Gorman of New Mexico took a deep breath and looked at the audience of healthy, able-bodied staffers and stakeholders. Caring for Robert, a colleague she met at work who became her “bestest friend” and ultimately died of chronic obstructive pulmonary disease, was “very challenging” and even sometimes “frightening,” she told them. “I think when you start the process of caregiving for someone who is a friend or a relative, it is unscheduled,” yet the demands are “like taking on a second job with no financial benefits.”

Among those demands: significant physical assistance, emotional support, organization of financial and household affairs and for many, responsibility for helping to make critical end-of-life decisions.

Gorman was one of a group of four caregivers and four legislators at the launch of the new bipartisan, bicameral caucus known as Assisting Caregivers Today (ACT). Her story resonates with millions of Americans who selflessly give of their time, energy, and resources to the tune of $450 billion in estimated support each year.[1] Caregiving is undoubtedly a noble commitment, but one that is increasingly unsustainable in a rapidly aging society, where the number of elders and individuals needing assistance will more than double while the numbers of family caregivers will decline precipitously. In short, it is time for policymakers to lend caregivers a helping hand.

At the launch, the four co-chairs pledged their support:

“We ought to come together as a country and agree that supporting caregivers is a clear, convincing priority that needs to be addressed…. We can’t afford not to do it.” —Rep. Michelle Lujan-Grisham

Family caregivers are “unsung heroes and unseen in many ways.” —Sen. Michael Bennet

Often, women who are family caregivers “either have to leave the workforce or…have to leave their school setting…or a volunteer setting in order to be the primary caregiver of someone that they love. This is a very consuming job and responsibility, and we need to give them relief and find ways that people can stay in their homes in the most comfortable setting as long as they can possibly stay there.” —Rep. Diane Black

“We’re willing and wanting to hear what you think…. This is just the beginning.” —Sen. Kelly Ayotte

So let’s get moving. Right now, more than 65 million family caregivers in the United States, who daily demonstrate their commitment to their spouses, children, parents, grandparents, and friends who are ill and disabled, are caught in a web of poorly coordinated health and social services.[2] They need solutions that go well beyond recognition of their efforts. Caregiving requires time, money, and timely access to information and in-home assistance. Our current health and social services systems offer very little support in any of these categories. As Joanne Jenkins of AARP said at the ACT caucus launch, now is the time “to find solutions to make life better for those in need.”

To start, caregivers need policy at the federal, state, and local levels to address workplace flexibility and the financial insecurity that results when they forego their own needs in the face of a fragmented care system that offers them no reliable support. There are some helpful solutions that can be considered. For example, the Family and Medical Leave Act (1993), which ensures that unpaid leave can be taken in times of health crises for workers and their families, could be slightly broadened to include all family members who provide care. Several states have developed paid family and medical leave programs, finding minimal adverse effect on employers.[3] Care systems in some other countries have decided that it is easiest to pay family caregivers. Many have established reliable respite programs. Why not the United States? Our health care system, which is gradually moving from paper to electronic records, does not even record the name of a patient’s caregiver, much less provide tangible help when it is most needed.

It is good news that Congress has established the ACT caucus. But it will take time to enact new programs or come to agreement on expanding existing programs. Meanwhile, here are some ways to raise the importance and salience of family caregiving at the local and state levels:

  1. Attend candidate forums and ask a question or two about caregiver support. Tell your story, or a story of a caregiver whom you know, and suggest how the community can do more to support these efforts.
  2. Insert some language about family caregiving into the agendas and reports of volunteer groups to which you belong, as well as professional organizations.
  3. Write responses and comments to blogs and articles about health care and social services programs. Put forward some ideas for solutions.

Right now, this country relies heavily on family caregivers to maintain the long-term care and health care systems but offers little to nothing in return—not even the assurance that they will have the basic information they need to ensure that their loved one is not in pain and discomfort. There is no national or regional “one-stop shop” of information and resources that can be queried for immediate help, counseling, and training and turned to by families in need of basic, reliable assistance.

It’s time to change this. A dwindling number of family caregivers can’t be expected to continue taking up the slack for poorly organized care systems. As family caregiver Chris Courington of Tennessee pointed out at the ACT launch, if Congress, states, and communities can partner to make it easier to access information about what to expect, what questions to ask, and where to turn when help is needed at home, “this would help all caregivers be more present with their loves ones and not worry about all the little things so much.”





Feb 022015

by Adam Singer

Symptoms such as pain and confusion are very distressing for those nearing the end of life and their families. That’s why increasing attention to end-of-life care is spurring greater interest in alleviating such symptoms as a critical component of quality of life. Yet there is still a long way to go: a just-published in the Annals of Internal Medicine ( finds there has been no improvement in the prevalence of common symptoms among end-of-life patients. In fact, many important symptoms — including pain and depression — have actually become more common.

In 1997, the Institute of Medicine (IOM) released a seminal report on the state of end-of-life care in the US that called for major changes in the organization and delivery of end-of-life care.[1] Many of the IOM’s indictments have ostensibly been addressed since that time through the expansion of palliative care and hospice, along with a greater focus on symptom management in both policy and practice. The Annals study was designed to ask whether end-of-life symptoms have become less prevalent from 1998 to 2010.

The study used data from the Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling adults aged 51 or older ( Using an interview design, HRS collects information after each participant’s death from a proxy informant (usually a family member) about that individual’s end-of-life experience, including whether the person had any of the following eight symptoms for at least a month during the last year of life: pain, depression, periodic confusion, dyspnea, severe fatigue, incontinence, anorexia, and frequent vomiting. Using that information and the date of each participant’s death, the study analyzed the prevalence of each symptom over time for the population as a whole and also for subgroups that died suddenly or had cancer, congestive heart failure (CHF), chronic lung disease, or frailty.

The study found that many alarming symptoms were common in the last year of life and affected more people from 1998 to 2010. For example, in the whole population, pain affected 54% in 1998 and 61% in 2010 (a 12% increase). Depression affected 45% in 1998 and 57% in 2010 (a 27% increase). Periodic confusion affected 41% in 1998 and 54% in 2010 (a 31% increase). Depression and periodic confusion also became more prevalent in subgroups with CHF and/or chronic lung disease and frailty. These results are summarized in Table 1 below.

Prevalence of Key Symptoms in the Last Year of Life in 1998 and 2010

Prevalence of Key Symptoms in the Last Year of Life in 1998 and 2010

In addition to the key results highlighted in Table 1, nearly all other symptoms in the whole population and in each of the subgroups trended toward increases in prevalence from 1998 to 2010, although most of these trends did not reach statistical significance. The one exception is that there were no significant changes in the subgroup with cancer.

High and worsening symptom prevalence near the end of life raises serious concerns about stubbornly ingrained shortcomings in end-of-life care despite the increasing national attention and resources being devoted to it. Indeed, recent studies of health care performance suggest that many providers continue to fall short in symptom management near the end of life.[2],[3],[4] The fact that pain remains common is particularly troubling, as this symptom is highly visible, well-studied, relatively reliably ameliorated, and has a large impact on health-related quality of life.[5] On the other hand, it is encouraging that trends in symptom prevalence in cancer may have stabilized.

While there have been many positive developments in end-of-life care since 1997, the Annals study shows that much more effort is needed to ensure that policy and organizational change translate to improvements in actual patient outcomes. Along these lines, there are many reasons why end-of-life symptom prevalence may not have improved since the IOM report:

  • Intensity of treatment has been increasing near the end of life, and even though hospice use doubled from 2000 to 2009, the median stay is under three weeks.[6],[7] “Tacking on” hospice to otherwise intense late life care may leave patients suffering in the meantime and simply may not provide enough time for hospice to help alleviate symptoms.
  • Palliative care services are more common in hospitals (where palliative care programs have tripled since 2000),[8] but most of the course of a terminal illness takes place outside of the hospital. Many patients may not have consistent access to palliative services known to be effective in promoting symptomatic relief.
  • Effective treatments exist for many end-of-life symptoms, but there are significant gaps in their delivery.[9],[10] Interventions may not be reaching the right patients in the right ways.

In summary, the prevalence of many end-of-life symptoms remains unacceptably and disappointingly high in light of active efforts to improve end-of-life care. Some best practices simply are not being followed. Some choices are not being adequately explained and offered to patients and the family caregivers supporting them. Aligning current care with best practices represents a promising way to harvest low-hanging fruit in order to reverse these negative trends and reduce end-of-life symptom burden for millions of Americans. But beyond that, the trends characterized in the Annals study must be parsed further in order to identify better and more coordinated ways to organize and deliver high-quality end-of-life symptom management.



[1] Approaching death: Improving care at the end of life. Washington, D.C.: Institute of Medicine; 1997.

[2] Walling, A.M., Asch, S.M., Lorenz, K.A., et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010;170(12):1057-1063.

[3] Dy, S.M., Asch, S.M., Lorenz, K.A., et al. Quality of end-of-life care for patients with advanced cancer in an academic medical center. J Palliat Med. 2011;14(4):451-457.

[4] Malin, J.L., O’Neill, S.M., Asch, S.M., et al. Quality of supportive care for patients with advanced cancer in a VA medical center. J Palliat Med. 2011;14(5):573-577.

[5] Relieving pain in America: A blueprint for transforming prevention, care, education, and research. Washington, D.C.: Institute of Medicine;2011.

[6] Teno, J.M., Gozalo, P.L., Bynum, J.P., et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009.JAMA. 2013;309(5):470-477.

[7] NHPCO facts and figures: Hospice care in America. Alexandria, VA: National Hospice and Palliative Care Organization;2014.

[8] Growth of palliative care in U.S. hospitals: 2014 snapshot. New York, NY: Center to Advance Palliative Care;2014.

[9] Walling, A.M., Asch, S.M., Lorenz, K.A., et al. The quality of supportive care among inpatients dying with advanced cancer. Support Care Cancer. 2012;20(9):2189-2194.

[10] Walling, A.M., Tisnado, D., Asch, S.M., et al. The quality of supportive cancer care in the veterans affairs health system and targets for improvement. JAMA Intern Med. 2013;173(22):2071-2079.

Jun 242013

by Dr. Muriel Gillick

A whopping 86 million Americans are family caregivers for an adult with significant health problems, according to a new report. Untrained, unpaid, and unlicensed, they take care of some of the sickest patients in the U.S.

Just under half of these caregivers provide complex medical care: this is a level of care that only doctors or nurses would be allowed to administer if the patient were in a hospital or nursing home. They supervise their family member’s medications, drugs that may have side effects so severe that patients taking them need to be hospitalized. They apply dressings to wounds, a procedure that is sometimes so painful that the patient has to take narcotic pain medicines beforehand. A minority even give intravenous medication or use equipment such as dialysis machines or ventilators that are customarily operated by specially trained professionals.

In the last three years, the percent of Americans serving as caregivers to an adult with health issues has gone from 27% to 36%, presumably related to the growth of the elderly population, the recession (which forced families to take on caregiving responsibilities rather than hiring outsiders), and the rise of chronic illness (fully 75% of older adults have at least one chronic disease such as diabetes or emphysema). The focus of the new survey is how these caregivers get the training they need to do their jobs.

The answer is both unsurprising and disturbing. When caregivers seek help, they rely heavily on a web search.

Caregivers often do consult a health professional—79% of them report they spoke to a clinician about their concerns. But they report wanting and needing much more guidance in carrying out their daily responsibilities. They say they use the internet to learn how to monitor drugs and how to diagnose and treat disease. What they uncover on the web ranges from sophisticated, up-to-date medical information to downright disinformation. Fortunately, a professional agrees with their diagnosis 41% of the time, according to the study. In the majority of cases, a clinician disagrees with the caregiver’s web-based diagnosis (18%) or the caregiver never seeks the advice of a clinician (35%).

It is time to recognize family caregivers as members of the health care team and make sure they get the right kind of training to do their job, just like their professional colleagues. To date, “caregiver support” has largely been psychosocial, intended to ease the stress that comes from taking care of a chronically ill relative an average of 20 hours a week. “Support” for the sophisticated role that caregivers often play, a role that is the key to optimizing medical treatment and minimizing hospitalizations, will require new resources. We need to be creative about designing these materials, recognizing that 60% of all caregivers have another job, usually full time. We will need to design videos and massive on-line courses (MOOCs) as well as how-to guides. The physicians who care for the frailest and sickest patients should take the lead: it’s what their patients need.

Dr. Muriel Gillick, is a geriatrician, a palliative care provider, and a professor at Harvard Medical School. She blogs weekly at Life in the End Zone ( She is the author of “The Denial of Aging: Eternal Youth, Perpetual Life, and Other Dangerous Fantasies.” This post appeared on her blog on June 24, 2013, and is reprinted with her permission.

key words: geriatrics, frail elders, family caregivers, caregiver support, Muriel Gillick, palliative care<