The Caregiver
Employees at work, caregivers
at home, uncertain in both
A Pitney Bowes White Paper


         Few people think twice about buying health, life and disabi...
A Pitney Bowes White Paper

Understanding your odds                                                                    ...
A Pitney Bowes White Paper

Today’s caregivers                                                    commitments to others...
A Pitney Bowes White Paper

  for single-floor living for those who would prefer to stay at       Patricia Bomba M.D., ...
A Pitney Bowes White Paper

  Traditional Advanced Directives                                Actionable Medical Orders
A Pitney Bowes White Paper

Forms for these documents are easily accessible via the
web, and, while time-consuming, non...
A Pitney Bowes White Paper

Already, many companies have increased their preventative
healthcare provisions, finding th...
A Pitney Bowes White Paper

End Notes
1 MetLife, Mature Market Institute® National Alliance for
  Caregiving, The MetLi...
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The caregiver Quandry - how companies can address the needs of their employees who are also caregivers


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The white paper provides a list of the ways in which companies can get started in supporting caregivers, which includes:
* Providing information, through webinars, seminars and links to key sites on the subject
* Establishing discussion or support groups for caregivers to share information, ideas and challenges
* Exploring mutually beneficial flextime, part-time and leave-of-absence options for caregivers
* Establishing connections with community support options like hospice that can both ease the physical and financial demands on caregivers and help them through the emotional challenges common to families at end-of-life periods.

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The caregiver Quandry - how companies can address the needs of their employees who are also caregivers

  1. 1. The Caregiver Quandary Employees at work, caregivers at home, uncertain in both
  2. 2. A Pitney Bowes White Paper Introduction Few people think twice about buying health, life and disability insurance. As long as one can afford it, the “right thing to do” is to pay the price for care and protect one’s self and one’s family from the economic fallout that could otherwise occur in the event of an accident, prolonged illness or early death. Through insurance, society routinely acknowledges, contemplates and mitigates economic risks. Up until now, however, less consideration has been given to the processes can become a battlefield of conflicting ideologies and other costs that arise when tragedy strikes or life simply runs opinion. its course – significant physical and emotional expenses are incurred when palliative care and ‘end-of-life’ decisions come Seeing these trends, astute individuals are beginning to ask the into play. right questions and make the right plans. They’ve found that recognizing and documenting the resources that one’s family, Recently, two trends have brought these issues of care and community and workplace can provide offers more than just decision-making to the forefront: peace of mind. It offers guidance for loved ones, colleagues, employees and friends – bringing some certainty to uncertain • One is the growing demands on the “sandwich generation.” times. People are living longer, retirements are lasting longer, and the young and middle-aged individuals who dominate the Corporations too have begun to weigh in. Smart employers are workforce are increasingly sandwiched between caring for their recognizing the ways in which they can help their staffs weather aging parents and caring for children of their own. Insurance the challenges of end-of-life issues and long-term care. Part may pay many of the related medical expenses, but it does little of the process is to provide information. Another is to provide to reduce the physical and emotional toll on those who juggle opportunities for personnel to address these questions before work, home and caregiving responsibilities. there is a pressing need, so they can be prepared for both the tragedy of the unexpected, and the eventual tolls of old age. • The second comes from extreme cases that illustrate the quandaries that arise when tragedy strikes and preparations Finally, people are coming to terms with how important it can be have not been made. Situations such as those of Terry Schiavo to look beyond insurance and prepare for all that it may take to and Karen Ann Quinlan provide a window into the heart- manage through difficult times. As personal and private as these wrenching questions loved ones face when preferences haven’t plans and decisions may feel, they are best thought through well been documented and decision-making responsibilities have before they are needed. not been assigned. In the best of these cases, relatives are tormented with the uncertainties of making decisions they feel are not really theirs to make; in the worst, the care and decision Page 2
  3. 3. A Pitney Bowes White Paper Understanding your odds When disaster strikes The chances today of suffering an untimely death have decreased Consider for a minute, if you or a loved one were to become due to advances in medical care. A look at the graph below shows disabled and/or terminally ill: the tremendous declines in cancer and heart disease death for those younger than 65. Similar trends are in evidence for other • How much time could be required for care? causes of early death as well. • Who would provide it? • Who would cover responsibilities at home and at work? However, as people live longer, their need for assistance • What toll could this disability take on those who provide increases, thus the incidence of caregiving is already high and their care? growing. As of 2004, the National Alliance for Caregiving and • How will finances be affected? the AARP estimated that one in five (21%) of US households were providing care for an adult family member or friend age These are just some of the many questions that should be 18 or older1. What’s more, rates of diseases like Alzheimer’s pondered well before these issues arise. Documenting plans are rising rapidly: the number of people aged 65 and older with and wishes, decision makers and caregivers can eliminate Alzheimer’s is estimated to reach 7.7 million in 2030 – more than confusion, reduce stress and help avoid painful conflicts a 50% increase from the 5.1 million aged 65 and older currently during these difficult times. Corporations too can help their affected2. employees understand and address these and other critical questions both for themselves and for those close to them. With the increase in these later-life degenerative diseases and the overall aging of the population, the growth in numbers of those needing care is far outstripping that of those available to act as caregivers – and looking ahead is more important than ever. Death rates due to Heart Disease and Cancers (Neoplasms) Age less than 65 Ages 65 and over Rate per 100,000 Rate per 100,000 110 Heart disease 3,500 Heart disease 26% of deaths 44% of deaths 100 in 1975 3,000 in 1975 Heart disease Heart disease 90 Neoplasms 2,500 80 Neoplasms Neoplasms Heart disease 30% of deaths 22% of deaths 26% of deaths 2,000 in 2005 70 in 1975 in 2005 1,500 Neoplasms Neoplasms 60 18% of deaths in 1975 50 Heart disease 1,000 Neoplasms 18% of deaths 22% of deaths in 2005 in 2005 40 500 1975 1980 1985 1990 1995 2000 2005 1975 1980 1985 1990 1995 2000 2005 Year of death Year of death Source: US Mortality Files, National Center for Health Statistics, Centers for Disease Control and Prevention. Rates are per 100,000 and age-adjusted to the 2000 US Std Population (19 age groups – Census P25-1103). Page 3
  4. 4. A Pitney Bowes White Paper Today’s caregivers commitments to others that they fail to take proper care of their All types of people are caregivers these days. The face of the own health. This, in turn, can increase all the other stressors at American workforce has shifted dramatically over the last an already stressful time. generation and that has brought about a substantial change in the caregiver population as well. According to a recent MetLife The benefits of planning study: Despite the growing probability that today’s baby boomers will need to provide some level of care for their aging parents, less • Nearly 40% of caregivers are men. than half have spoken with their parents regarding their parents’ • Nearly 60% of those caring for an adult over the age of 50 are treatment wishes in the event of a terminal illness, and fewer working; the majority of those work full-time. still (44%) about their parents’ wills5 . • The average age of the caregiver for a person over the age of 50 is 47, but caregivers today range from young adults to senior These types of conversations can be uncomfortable and, for citizens3. many, they have long been taboo. Yet, they are very important, and they should take place earlier in life well before age, illness, More often now, caregivers are looking after both their parents or injury becomes an issue. The reasons are two-fold: and their children. They are working – often full-time – and juggling all of these responsibilities during tough economic • They can help to ensure a better experience for those needing times. care. • They can enable advanced planning that can substantially Caregiver challenges reduce the emotional, physical and economic burden on Employed caregivers on average spend close to four years caregivers and those around them. providing care4. During that time they can face major career and personal challenges: Options for end-of-life There are those who would want to do everything medically • Uncertainty – emergency doctor visits and hospitalizations possible to continue living. Others would prefer to let nature and other crises add to daily stress. take its course. Thinking objectively through the options and • Time constraints – traveling for one’s career can become specifying preferences is the first step toward ensuring that one’s difficult or impossible, caregiving pulls time away from work wishes can and will be carried out as closely as possible. and from young families. • Economic hardships – many caregivers have had to give up the Mapping a plan for living possibility of more lucrative positions, reduce their hours or Sixty-seven percent of people state that they would prefer even take leaves of absence from work with resulting declines to die at home, yet only 26% actually do so6. Whatever one’s in income even as caregiving expenses mount. preferences, documenting choices, designating a caregiver, and • Emotional strains – watching a loved one decline is stressful working together through some of the practical challenges that under any circumstances, and is all the more stressful when could arise is the surest path toward an end-of-life experience faced with a full load of other responsibilities. that most closely matches those preferences. Here are some • Isolation – often, caregivers are reluctant to openly discuss of the key planning steps: their challenges with their employers and coworkers because they fear that doing so could further jeopardize their jobs or • Identifying the roles that the children can best play in providing careers. different aspects of care. • Health issues – caregivers can become so consumed by their • Exploring home health aide options and preparing the home Page 4
  5. 5. A Pitney Bowes White Paper for single-floor living for those who would prefer to stay at Patricia Bomba M.D., F.A.C.P. and Vice President and Medical home. Director of Geriatrics at Excellus BlueCross BlueShield,7 • Planning, budgeting and reserving accommodations for those advocates a two-step approach to advance care planning that who would prefer assisted-living. results in two types of documents. Under her leadership, the • Outlining financial plans, funeral planning, provisions for care, Rochester, New York-based Community-wide End-of-life/ and last wills and testaments. Palliative Care Initiative has developed: • Reviewing health, disability and long-term care insurance for 1) Community Conversations on Compassionate Care (CCCC) its ability to address the expense of palliative care. 2) Medical Orders for Life-Sustaining Treatment (MOLST) • Understanding the options – public and private – that are available to help in providing palliative care today. Both programs facilitate discussion and help to ensure that wishes are both known and actionable. Putting preferences in writing Terry Schiavo and Karen Ann Quinlan spent years on life support • The 2008 End-of-Life Care Survey of Upstate New Yorkers: as their families and the courts battled over decisions that they Advance Care Planning Values and Actions, Summary Report, could no longer make for themselves. Rare as these public cases 2008 confirms the CCCC Program is effective. Upstate NY may be, they highlight the physical, emotional and economic leads the nation in achieving a 42% completion rate for stresses that often occur less publicly for many more people advance directives, exceeding prior regional benchmarks and struggling through these situations regarding their critically ill all published national metrics. Community education and loved ones. physician recommendations are key variables that correlate with the highest completion rate (47%) in Rochester, NY, where Putting wishes into writing is simple. And often, documenting the CCCC Program began. one’s own wishes first sets the stage for easier, more informed • A decade of research on the POLST (Physicians Orders for discussions with loved ones about putting their wishes in writing Life-Sustaining Treatment) Program that began in Oregon and as well. has served as a model for the MOLST program in New York shows that seriously ill patient preferences for care are more consistently honored when medical orders are put into place. On the next page, find more information about traditional advance directives and actionable medical orders. It’s personal Consider Sue. Her two children are both very close to her. Yet, with Sue incapacitated, both have totally different views of what she would want. One, citing Sue’s fighting spirit and zest for life, is sure that she would want to pursue every possible treatment. The other, citing her practicality and her love for living life to its fullest, is sure that Sue would refuse to live on a ventilator if she could make the choice. Who’s right? These are very personal decisions; and, however amicably the children settle the choice between them, without Sue’s specific input, there will always be uncertainty, second-guessing and doubt that could strain their relationship for the future. Page 5
  6. 6. A Pitney Bowes White Paper Traditional Advanced Directives Actionable Medical Orders For all adults 18 years and older For those who are seriously ill or at the end of their lives All adults are advised to address certain decisions as early Patients with serious health conditions should consider as possible in their lives, share those decisions with their discussing more specific actionable medical orders with loved ones, and revisit and revise those decisions as need their physician. A health care professional must complete be throughout their lifetimes. Ensuring that all of these medical orders based on your desires and current medical documents exist and are up-to-date, identifying executors, condition. Your physician, and in some states your midlevel and informing loved ones of where the documents can be provider, must sign the orders. You keep the original form located when and if they are needed can reduce a great deal as you travel to different care settings. Your doctor keeps a of the emotional stress during difficult times. copy. Keeping the forms close at hand ensure that they can be quickly acted upon as needed: Health Care Proxy This is the person designated to make healthcare decisions DNR (Do Not Resuscitate) Order/Allow Natural Death on one’s behalf. The person selected needs both to Resuscitation instructions tell others what to do when your understand and respect one’s wishes and to have the heart stops and/or you stop breathing. A DNR order means emotional capacity to manage decisions even if conflicts you want to have a natural death and do not want to begin should arise. Often, this is the most important advance any treatment to make your heart and breathing start again decision to document – all other documents can be subject when you die. to interpretation. Medical Orders for Life Sustaining Treatment (MOLST) Living Will Program /Physician Orders for Life Sustaining Treatment A living will (also known as a Healthcare Directive or (POLST) Paradigm Program Declaration) provides direction regarding use of medical These two programs perform similar roles in different treatments and life-sustaining measures such as cardiac states. The forms are more comprehensive and provide resuscitation, mechanical respiration, antibiotics, and explicit resuscitation instructions and other types of life- ventilation and feeding tubes. It addresses the degree to sustaining treatment that the patient may or may not want, which one wishes life-sustaining interventions in a terminal e.g. decisions about transport, ICU care, antibiotics, artificial or irreversible condition. nutrition, intubation and mechanical ventilation. They are designed to: Organ Donation • Assist health care professionals in discussing and Completing these decisions at a young age is particularly developing treatment plans that reflect patient wishes. important. Documenting organ donation decisions saves • Result in the completion of a MOLST or POLST form. All time and can save lives because it can lead to faster organ physicians, nurses, health care facilities and emergency transfer. personnel must honor these medical orders that reflect patient wishes regarding life-sustaining treatments. The MOLST or POLST form is brightly colored and resides in front of the patient’s medical records in a health care facility. To be sure the form is immediately accessible if needed, in the community, the patient or their caregiver places it on the refrigerator where Emergency Medical Personnel will check for it. Page 6
  7. 7. A Pitney Bowes White Paper Forms for these documents are easily accessible via the web, and, while time-consuming, none of them are difficult Suffering in silence to complete. However, it is equally important to remember to Consider Al who is taking care of his aging mother. He is discuss the contents and location of executed documents with getting up early before the daytime caregiver arrives; staying loved ones. Making documentation easy to locate and clear in up late to take care of chores, bills and medical paperwork; its directives can help to ensure that wishes are acted upon as and getting up at night when his mother needs him. He’s outlined if it becomes necessary. afraid to mention this burden at work – times are tough, there are rumors of layoffs, his caregiving responsibilities Wills and other Financial Planning Documents are expensive as well as exhausting. Because he hasn’t While putting things in writing, it is smart to include wills and spoken up, his boss and the other members of his team end financial plans in the process. These are not health planning up covering for him, but it’s often a step too late. Deadlines tools. However, these documents should reflect medical wishes slip, deliverables are not met as well as they could be, and insofar as they make provisions to financially support them. clients start to grumble. The ripple effect… it takes, and impacts, Cases like Al’s are not unusual. The people he works with could a village help him through these challenges and proactively step in to End-of-life and palliative care issues take the largest toll on cover for him as needed, but only if he tells them what is going those directly giving and receiving care. However, their personal on. All too often, the truth of these situations comes out only and professional communities are impacted as well. when the caregiver faces a crisis – by then, patience can be worn thin and damage may already be done. Personal communities have a tradition of helping people in these challenging times. Civic and religious organizations often step Just as the children of aging parents need to have difficult but in to provide care for the fortunate caregivers who have access important planning discussions with their elders, employers and in the form of rides for the children, meals for the families, employees need to speak with those they work with about their collections for the medical expenses, assistance where it is caregiving responsibilities before they become an issue. needed. Hospitals and other organizations also offer support groups to help with the emotional trauma of facing the dual Increasing employer supports burden of caregiving and watching a loved one slip away. Online Companies are beginning to recognize the need to encourage communities provide important information (see Learn More – transparency and provide supports for the caregivers among on the next page) and connections to local resources. Personal them. The National Business Group on Health – a group communities come together in these times of crisis to positive consisting of forward thinking organizations proactively effect. addressing the health issues that impact their employees—is an important resource. It is developing informational resources and At work, however, the situation can be a bit tougher. Try as he exploring business policies to reduce the negative impact that or she might, the caregiver often becomes less reliable, less caregiving can have on caregivers and on the businesses that focused, less productive – and, because he or she is often not caregivers support. communicative about the issues at home, it becomes more difficult for those in the workplace to provide important supports. By making caregiving challenges a part of annual benefits- planning documents and discussion, businesses can help their employees take necessary steps toward planning a better end-of- life experience for themselves and their loved ones. Page 7
  8. 8. A Pitney Bowes White Paper Already, many companies have increased their preventative healthcare provisions, finding that by helping employees to take Learn more better care of themselves, they can improve both productivity These sites provide additional information on the challenges and morale. With more than one in five working adults providing – and solutions – for planning for and providing care: care today, and the expectation that that number will rapidly grow in coming years, helping employees to help each other and All issues themselves through the caregiving process will be beneficial, and Community-wide End-of-life/Palliative Care Initiative: may be essential. Some of the ways in which companies can lend a hand include: Caregiving • Provide information – through webinars, seminars, and links to AARP: key sites on end-of-life planning (see Learn More at right) etc. National Alliance for Caregiving: – on end-of-life planning. National Family Caregivers Association: • Establishing discussion/support groups for caregivers to share information, ideas and challenges. FCA: The Family Caregiver Alliance: • Setting up employee emergency pools to supplement insurance Metlife: during caregiving crises. • Exploring mutually beneficial flextime, part-time and/or leave- Advance Directives & Living Wills of-absence options for caregivers. Community Conversations on Compassionate Care • Establishing connections with support options like hospice that (CCCC): can both ease the physical and financial demands on caregivers resource_directory/compassion_and_support_video_library/ and help them through the emotional rollercoaster of end of community_conversations_on_compassionate_care_videos life. Advance Care Planning booklet: • Encouraging transparency and ongoing support, so that caregiving crises can be more readily absorbed by coworkers 2009RevisedACPBooklet-Excellus-Color-Web.pdf and the corporation. Five Easy Steps: • Offering counseling and advice on the financial aspects of end- php/for_patients_families/advance_care_planning/five_ of-life planning, caregiving and palliative care. easy_steps Five Wishes: Bottom line: it’s peace of mind Caring Connections: Today, it’s not enough to know that financial provisions have been made for one’s loved ones. Shifting demographics and MOLST/POLST medical advances are making long-term and palliative care MOLST: more important than ever. However, with more resources and POLST: increasing employer support, it’s become both more acceptable and easier to make the necessary preparations for the emotional Spanish and physical challenges that end-of-life issues pose for the patient, the caregiver, and their communities. Understanding choices and discussing and documenting preferences are the Hospice Care first key steps toward greater peace-of-mind through these Hospice: trying times. Page 8
  9. 9. A Pitney Bowes White Paper End Notes 1 MetLife, Mature Market Institute® National Alliance for Caregiving, The MetLife Caregiving Cost Study: Productivity Losses to U.S. Business, July 2006 2 Alzheimer’s Association, 2010 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 6 3 MetLife, Mature Market Institute® National Alliance for Caregiving, The MetLife Caregiving Cost Study: Productivity Losses to U.S. Business, July 2006 4 Ibid. 5 Taylor p. Funk C, Kennedy C, Social trends report: baby boomers approach 60: from the age of Aquarius to the age of responsibility. Washington (DC): Pew Research Center; 2005 Dec 8. 6 Lake Research Partners, Attitudes toward end of life care in California [Internet]. Oakland (CA): California Healthcare Foundation: 2006 Nov [cited 2009 Jun 22]. Available from: 7 Excellus is a nonprofit independent licensee of the BlueCross BlueShield Association Pitney Bowes Inc. © 2010 Pitney Bowes Ltd. All rights reserved. Pitney Bowes is a $5.6 billion global technology leader whose products, services and solutions 1 Elmcroft Road deliver value within the mailstream and beyond. Founded in 1920, our company’s 33,000 Stamford, CT 06926-0700 employees deliver technology, service and innovation to more than two million customers USA worldwide. For more information about Pitney Bowes, its products, services and solutions, 9854 (05/10) T: 203 356 5000 visit