Chapter 7

Professional, Volunteer

and Systemic Tips


Once a year I suggest you either: become a patient, follow a patient through the system, answer the telephones at a health care facility and/or shadow a front-line health-care worker for a while. This will help you practice, model and teach some of the following ideas and to experience the perspective of patients and their families. Walking with a patient and their family through a part of their process is the single best way to understand how everything you do impacts the patient and family.


   Caution:  Family caregiver is a healthcare term. Family caregivers must be seen and respected as children, spouses, parents, friends and neighbors first and foremost. We need to label them in discussions about their role in care, but we should never presume that caregiving is how they identify themselves. They are more likely to self-identify based on their relationship with the person who is ill rather than in their role of caring for that person.


   The following are a list of ideas to help you in your professional and volunteer work. Some are specific ideas you can do without having to get permission from your program or service. Others will require you to work with your colleagues to enhance your program and service to better meet the physical, emotional, spiritual and information needs your patients and their families.


   1. Value the life of patients. To provide excellent care you must begin with the belief that their life is worth living. The phrase we looked at earlier in this book - “I would rather be dead than…” - prevents you from seeing a person's life as worth living if you believe you would rather be dead than have a similar condition. You need to identify those conditions and come up with a thoughtful response of how you value the life of that specific patient or transfer your work over to someone else who can.


  2. Value and enhance the social roles of patients. People receive the best care possible when those around them see them in valued social roles like their role as parent, spouse, worker, volunteer, community leader, teacher, etc. Even when the person can no longer fulfil their role because of their illness, any new staff and volunteers working with that person needs to be told about all the valued roles this person played. It is not hard to believe that a much loved parent and community leader would get better care than a person without family nearby whose past history is little known or understood. You can help every patient identify their valued social roles and help others recognize those valued qualities in the person they are caring for.


   3. It is relatively easier for smaller programs and organizations to be patient-centered. If you cannot be small, learn from those that are. Learn from those who practice closest to their community members rather than in departments in large institutions. Learn how to move from identifying patients by numbers or conditions and truly see the person receiving care. Understand that smaller program staff has more opportunities to get to know each other's strengths and weaknesses and, therefore, build a stronger team of care providers. Learn how publicity, fundraising, accounting and community awareness of the programs are all different when done in small, accountable and well run programs.


  4. Minimize the number of people involved in caring for each patient. It is true that this may difficult to schedule and more costly (from an organization's perspective versus the incalculable cost to patients and families) but it is one of the most critical aspects of systemic care today. At the end of one's life, you want to minimize as much as possible new people entering their lives. Not only does this mean yet one more person for the patient to get to know but they also become one more person to say goodbye to. Any changes in staffing or volunteers also requires more patient and family “training” of the new person to get them to understand the person's medical history and current needs and hopes for end-of-life care. Each time the stories must be repeated is time taken away from caring for the person and the family. Time is obviously precious and should not be wasted on 'training' new staff or volunteers.


   5. Well-trained staff must understand, practice and model excellent physical, emotional, spiritual and information care. It is not enough to acquire knowledge and skills. Many health care providers know how to provide excellent care but are discouraged by time and resource restraints from providing that care. They may also be restrained by untrained colleagues (whether in their own discipline or from another one) who do not want anyone else telling them how to provide better care. These are internal, communication and training issues that need immediate address. By law health care providers must report suspected cases of child or elder abuse. Ethically, one must also ensure that patients receive excellent palliative care. Anything less is often tortuous and abusive - it is why, after all, the hospice movement was started.


   6. End turf wars. Show the leadership that patients expect, need and demand to work together cooperatively. Do not make the patient or their loved ones suffer for systemic difficulties. Speak up on their behalf to regulators, governments and funders. That someone in one part of a city or community receives better care because their program got funding while another did not, is unacceptable. That one's care is more dependent on how powerful their care providers are relative to others is unacceptable. That care providers will actually fight for resources and money without regard to the effects on patients and their families (the 'empire builders') is unacceptable. We must start by examining the results of our 'turf' wars on patients and their families. Then we can better deal with negotiating equity division of limited resources.


   7. Advocate for equitable pay scales between institutional and community care (e.g., in some towns and cities, community nurses receive about 50% of what hospital nurses earn without benefits or job security). This is just wrong. Care in the community is not easier, nor less important. Nurses should not have to decide on the kind of nursing they want to do solely on where they can earn the most money. More and more patients are receiving care at home and deserve qualified, committed nurses to provide the care. There should be no second-class professionals providing care at home. They all deserve equal compensation based on their knowledge and skills, not where they practice.


  8. Recruit a broader range of staffing so that one or two cultural groups do not represent the majority of your staff (especially in diverse multicultural communities). When we travel abroad, we often gravitate to people from “back home.” This is natural. At the end of life, many people return to speaking their mother language and remembering their youth. The more diverse our working force, the more we can help people emotionally as well as physically and spiritually.


   9. Replace some of the high-tech, costly and ineffective treatments for a more humane, holistic care.  For cancer patients, as an example, 75% of all the health care money spent in your life from the moment of conception to death, is spent is the last year of your life  - and they die anyway. Surely we can reallocate dollars so that excellent physical, emotional, spiritual and information needs are met without costly, intrusive, tortuous treatments that do not improve someone's last months of life. 


  10. Follow the age-old wisdom of ancient religions (and health care systems): do unto others. Build the type of care programs that you will want to use one day for your families and for yourself. All of the excuses used not to provide excellent care mean absolutely nothing to people who need that care. It will be the same for you and your family. Arguments against consistent staffing, limited resources, turf wars are all things that matter to people who run and work in systems, but not the end users and recipients of the system. Concentrate on results rather than on processes to provide the greatest impact for everyone involved.


  11. Many vulnerable patients are voiceless in our health care system. Advocate strongly on their behalf. Put the emphasis on patients with long-term care needs, our frail elders, people with disabilities, our patients needing palliative care and our fellow citizens who are poor who have few outside resources. These non-vocal and mostly non-voting family, friends and neighbors should not continue to be the victims of systemic problems. We must stop inflicting harm on those of us who are already harmed so much by their devalued status in our communities.


Our expectations must be based on an understood, practiced, disseminated and monitored philosophy of patient care that includes everyone having access to effective physical, emotional, spiritual and informational supports to live fully until their deaths. Their families, friends and care providers need to receive similar support and after-death bereavement supports if necessary.  A person's background (age, gender, income level, language, education, etc.) cannot be a determining factor. We have enough examples of excellent care now to know what it should look like. The challenge is to replicate consistently and predictably what we know works well.




Chapter 8

Community Action

The Goal of a Pain-Free Community


If we are going to have the type of care we want for our own loved ones, and for ourselves, then we must change the systems of care available now. We begin with the undeniable fact that:

No one who is dying needs to have unbearable pain - no one.

To experience it, unrelieved, is negligent and immoral.

We must recognize that:


  1. 75% of all health care money spent in a life time for cancer patients is spent in our last year and they die anyway (therefore, reallocate funding to include more for home care, palliative care),

  2. we have the knowledge, skills and resources now to provide excellent care,

  3. we must support hospice care providers more effectively,

  4. we must co-ordinate effective care locally,

  5. we must limit the growth of individual hospice care services (small is better than big),

  6. we must limit government funding and return to endowment funds, donations and workers (professional and volunteer) who see hospice work as a vocation rather than a career.

  7. No one who is dying needs to have unbearable pain - no one. To experience it, unrelieved, is negligent and immoral.


In a bilingual survey Legacies commissioned in 2000 we found out that about 25,000 Canadians die each year with unbearable pain. This result was not based on a worst-case scenario. Rather the question we asked was “When your loved one's pain was best managed, what was it on a scale of 1-10 with ten being the worst pain?” Based on that question, about 25,000 Canadians each year have pain between 7-10, when it was best managed!

   Specifically the results by (Dialogue Canada), May 2000 (2,404 surveys returned) were:

  1. 1/3 adult Canadians had family member or close friend die of a terminal or life-threatening illness within previous 2 years

  2. 29% had pain that was unsuccessfully treated most, or all, of the time

  3. 28% had pain that was unsuccessfully treated some of the time

  4. when pain was most effectively controlled, 44% of these patients had terrible pain (between 7-10 on 10-point scale with 10 = very great pain) or approximately 25,000 per year.


We concluded that:


  1. There is no strong advocacy voice for patients (although many agencies, services, organizations and associations represent professionals and volunteer care providers).

  2. Too few people receive any form of effective palliative care (physical, emotional, spiritual, information).

  3. Insufficient leadership within health care and insufficient political will to resolve these obvious problems quickly and effectively.

  4. Insufficient thoughtfulness on preventing a repeat of modern health care bureaucratization and expansion; and short-term view of integrating into ineffective system.


Pain and symptoms can always be helped so that people can live as fully as possible and participate in their family and community life.

   Locally, you and your allies in the promotion of excellent hospice palliative care can:


  1. 1.require palliative/hospice care providers to demand of their colleagues in other branches of medicine, nursing, and social work to use the proven methods to control unbearable physical pain. We have legislated that care providers must report child and elder abuse done by their colleagues; we can do the same to prevent the torturous neglect of dying people.

  2. 2.recognize pain as the fifth vital sign that must be monitored and addressed regularly by physicians and nurses (the other four being temperature, pulse, respiration and blood pressure). It is not acceptable to ignore pain and discomforting symptoms when we have the skills to control them.

  3. 3.educate the general public to understand and accept the basic principles of effective pain and symptom control so that they do not expect or accept, inadequate control of unbearable pain.

  4. 4.require health care administrators, insurance companies, and health care bureaucrats to ensure and monitor effective pain and symptom control and that they publicly and forcefully deal with those who negligently do not practice it.

  5. 5.demand legislators to revise laws and regulations to strongly encourage and monitor effective pain and symptom control and forcefully deal with those who negligently do not practice it while safeguarding those who practice effective pain and symptom control from malicious prosecution.


If we do these things together, then when someone we know is dying, they will not suffer unbearable pain BUT RATHER be relatively pain-free and alert with the energy to live life to the fullest with their family and friends. We promote excellent hospice palliative care to improve the care of all community members but we also do it to ensure that our own families, and one day us, also have compassionate, personal care. This humane motive includes everyone we know and love as well as people we will never know. That is the hospice palliative care philosophy represented at its best and we control the outcomes when we work together.


Chapter 9

Past, Present and Future of Hospice Palliative Care


We are the guardians of the

modern hospice movement.

We must teach, role model,

expect and inspect excellence.

                       


The hospice palliative care movement is at risk. It is at risk of becoming an industry rather than remaining a movement. What is the difference?


   A movement is based on a philosophy that leads to specific principles of care. In the case of hospice palliative care the philosophy is one of meeting people's physical, emotional, spiritual and information needs. The principles that derive from the philosophy include:


   Care must be provided based on what the patients and families describe as their needs regardless of what systemic limitations there exist. When limitations prevent meeting the needs of patients and families, those limitations must always be noted down as limitations so they are never seen as the appropriate level of care provided by a service.


   For example, patients often identify the need to have consistent care providers in their home. Many community-nursing agencies cannot provide that consistent one or two nurses so the patients often will see 4-6 different nurses. The agency cannot meet the need for consistency and, therefore, must recognize an unmet need rather than create a policy that says that having 4-6 different nurses is optimal or sufficient care.


  Another example: a small community hospice may be forced by funders to accept more clients than they can reasonably be expected to care for at the levels that they are used to providing. If the Board of Directors accepts these limitations to care, they must never expect their staff, volunteers or clients to see this “new level of care” as equal to or even better than what was offered before. They must always strive to return to the higher individual level of care provided in the past.


  Care must be evaluated based on what the patients and families actually receive in the way of care as opposed to evaluation based on other systemic criteria. What typically happens now is that many hospitals, for example, continue to receive certification because they meet program standards yet they consistently demonstrate their inability to meet the needs of dying patients. This is plainly wrong. People within the health care systems say it is wrong. Patients who receive inadequate care say it is wrong. Yet it continues to happen.


  Many programs have excellent vision statements about the importance of patient-centered care and, therefore, receive credit for the statement during their accreditation process but not criticism for when they do not provide patient-centered care.


   Examples of positive indicators of meeting a patient's needs are when their pain and symptoms are well controlled, when their concerns about being a burden to their family are addressed, when the family's worries are discussed.


   Patients and families must be informed of what possibilities exist in the way of hospice palliative care and helped to make decisions that will allow them to live fully until they die.


   These changes will only happen when we evaluate results rather than good intentions (i.e., mission statements). We need to measure and publish such results.


   A hospice in New York State4  used the following criteria to determine which clients would receive residential care in their facility: how long they had been on the waiting list, how seriously ill are they, how much or little family and community support do they have, and how much political influence they have in their community. This last criteria, was argued to be necessary to ensure ongoing political support and funding for the hospice. This is in clear violation of human decency but also of the principle that everyone deserves equal treatment and awareness of their treatment possibilities.


   The modern hospice movement, started in England in the mid 1960s, has expanded across the world at an exponential rate. The amount of professional and volunteer organizations that bring together learned people to share their visions of hospice care is staggering and wonderful to see. However, we continue to be at risk of letting policies, procedures, funding, government actions or inactions determine the final care provided to our patients and their families. We are at risk of growing so quickly and broadly that we forget for whom we are caring. We are making the same mistakes that traditional hospitals make - putting the system and its workers' needs ahead of patient needs.


  The hospice movement started in reaction to the often-traumatic deaths that many of our family members experienced. We saw people with tortuous pain. We saw people isolated from their communities and families in hospital wards at the end of hallways where few people visited. We saw people beg to die because they could no longer take the pain.

The hospice movement, therefore, tried to show a different way - a humane, ancient way of care that, coupled with modern pain relief techniques, provided people with a full life until they died with as many of their needs met as possible.


   Many of these original programs were outside of the hospital system. They were provided in separate facilities and/or in the homes of patients themselves. Their purpose, aside from providing excellent care, was to demonstrate to hospitals, and the health care system in general, a better way to provide care.


   With time and funding considerations, the movement has become more a government-funded program either tied directly or indirectly to hospital care. Rather than hospitals and the health care system adopting the hospice care philosophy, principles and models so they could provide better care, these hospitals are usurping the movement by forcing it to join the larger, less humane health care system. This is not a surprise to anyone who studies how all systems changes occur over time. There is always a movement from “small is better” to “the bigger the better.”


  We have the first principles of care and we know how to implement them. We have successful models around the world that should show our larger systems how to provide better care. However, we have historical trends that demonstrate that our principles and visions will likely not survive if we are not careful.


  To see how these historic trends have changed health care in the past, let us begin with our successes and challenges and compare those to the past.


Achievements & Challenges

Since the mid 1960s in Britain and the mid 1970s in other parts of the world including North America we have seen exponential growth in the idea of providing hospice care to people who are dying. Here are some examples:


   There are now more people (public and care providers) who know about hospice palliative care each year and some understand what it means in practical terms. According to the Canadian Hospice Palliative Care Association (CHPCA), 95% of Canadians want quality hospice palliative care5  and know, somewhat, what that means. When the movement started only 40 years ago, it took at least 20 years (a generation) to help the public and health care providers understand the term at all.


  There are more people now receiving hospice palliative care (to varying degrees of effectiveness) and, therefore, fewer people suffering horrific deaths or tortuous, ineffective treatments. However, CHPCA and the National Hospice Palliative Care Organization in the United States puts this number at between 5-15% of patients. This means some people are getting effective pain and symptom control, emotional support (including bereavement support, and respite), spiritual support, and practical information. Most people receiving hospice palliative care are cancer patients and AIDS patients. That leaves many people with heart disease (a more difficult end-of-life prognosis to give), neuromuscular diseases and aging without proper care.


   CHPCA states that about three million Canadians provide care to a loved one with a long-term illness.

248,000 Canadians die each year with about three-quarters dying in hospitals or long-term care facilities, many others by sudden death or injuries, and some at home. By 2020 CHPCA projects that 330,000 Canadian will die per year and most will not get palliative care.


   Every 2.4 minutes someone dies in Canada. The vast majority do not die with their physical, emotional, spiritual and information needs met. In 1975, none of them received palliative care. Today 5-15% do with programs numbering in the hundreds. When I started in this field in the late 1970s, there were only a few dozen programs.


   We need to continually go back to our basic philosophy of hospice palliative care. Everyone should have access to effective physical, emotional, spiritual and informational supports to live fully until their deaths with their families, friends and care providers receiving similar support and after-death bereavement support if necessary. A person's background (age, gender, income level, language, education, etc.) should not be a determining factor. We have enough examples of excellent palliative care now to know what we need to do to be consistent in replicating these successes.


   According to Statistics Canada projections, our aging population (65+ age group) will change from 3.9 million in 2001 (12.7%) to 6.7 million (18.9%) in 2021. In the 'old days' of 1901 we had 5% of population over 64 and 7.8% in 1951 when the boomer generation was just starting.


  Our growing aging population is relative unique. Only 3 other countries have a 'baby boom' population (US, Australia and New Zealand).


        2001        2011        2021

# of Canadians    31,002,200    33,361,700    35,381,700

Ages 25-29    2,100,300    2,263,500    2,355,700

30-34        2,252,500    2,293,000    2,430,700

35-39        2,641,700    2,278,100    2,431,900

40-44        2,659,100    2,370,300    2,411,500

45-49        2,384,900    2,681,700    2,341,400

50-54        2,114,700    2,637,400    2,370,200

55-59        1,625,900    2,318,300    2,611,600

60-64        1,291,100    2,011,300    2,516,300

65-69        1,137,800    1,495,800    2,140,400

65+        3,935,100    4,845,900    6,670,600


If you were 45 or older in 2001, you will be part of this elder group in 2021. What services will be in place for you, for your elders, for your siblings and for your children?


Brief Historical Overview (How Best Practices DEVOLVE)

Bigger is not better. However, historic trends led small, effective program models to become large, expensive and ineffective ones. In the mid-70s in Canada the hospice palliative philosophy of care was designed to combat impersonal and tortuous treatment of dying patients. Expansion of small, effective programs into large, ineffective ones is an historic cycle. The following brief overview is presented by Professor Wolf Wolfensberger of Syracuse University, New York in his workshops on the history of health care and social services in Western civilization. This summary is provided here with Dr. Wolfensberger's kind permission.


   Broadly stated, modern health care and hospices evolved from Xenodochea (Greek Inns that lasted for over 1,000 years and were revised into Judaic and Christian service models. Incubation Healing Shrines began in 11th century BCE and were changed by Romans into Epidaurus - centers for travelers to rest, eat well, heal, pray and cleanse themselves (some had a capacity of up to 20,000 people). Designs for modern TB Sanatoriums were based on the sleeping-porches model used in these healing shrines. Early Christians adapted (a) the Incubation model into their Nosocomia religious centers that became hospices (place of hospitality) and (b) the Roman Valetudinaria (convalescent homes) that held up to 250-300 soldiers (e.g. 70 CE) into small rooms for 3 soldiers each for hygienic purposes. With the fall of the Roman Empire this model was not seen again for 1800 years until about 1850.


   Hospices were developed on the biblical corporal works of mercy (i.e., feed the hungry, give drink to the thirsty, clothe the naked, take in the homeless and hospitality to strangers, visit the sick, go to and comfort and liberate the imprisoned, bury the dead). The early Christians had strong community supports as a prosecuted group. When they became the 'official' religion, they lost those bonds to a degree and organized parish soup kitchens (rather than sharing from one's home) and community hospices. Over time, church councils mandated that every parish have a hospice close to the church. By 550 CE, monastic orders began to develop services for the poor and hospices for travelers and the sick.


  Hospice services were seen as a way to heaven and each person served by a hospice was perceived as the 'hidden Christ.' That is, each person could well be Christ returned to earth for his second coming. Therefore everyone must be provided with the care that Christ deserved in case it was actually him. Service was free. These hospice services lasted for about 1,000 years and a few exist today (e.g., Hospice of St. Bernard Pass began in 962 CE). Hospice guests were referred to as “precious to God”, “treasury of the church”, “God's people”.


   Compare these terms that exalted visitors to the views of some patients today in health care facilities (e.g., “waiting to die”, “hopeless”, “GORK” -- God Only Really Knows whether this is a person or not, and “SHPOS” as written in some medical records - sub-human piece of s--t). In the past, the maxim of hospices was “One must not further afflict the already afflicted.” At St. John of Jerusalem Hospice, guests each had their own bed while it was normal in the society for six people to sleep in one bed. The guests were served food on silver dishes while care providers ate basic meals on common stoneware. Hospices were funded by perpetual endowment funds, lavish alms giving and bequests and inexpensive servers.


  Originally hospices were one or two people staying in someone's home and receiving informal and voluntary care (until about 340 CE). Through the religious mandate to have formalized hospices in each parish, 12 people (same number as Christ's disciples) shared a hospice. By 1200 CE (Medieval times) a greater demand saw increase of hospices in multiples of 6 or 12 more beds added. Increased demand required additional extensions or building several new hospices in an area, with bigger buildings, multiple stories, longer hallways, multiple arms (i.e. move from one hall to 4 halls (shape of cross) to many hallways running out from the centre spoke of the building where the altar would stand.


   All designs had patients placed to be able to see the altar from their bed (which limited the size of buildings/rooms for a time). What began as 12-bed facilities turned into facilities for hundreds, even thousands of people especially during the 1400-1600s with the dramatic increase of poor people due to pestilence, bubonic plague, poor weather for crops, warfare, political absolutism that deprived lower classes of land and freedoms, and debased currency as are result of taking precious metals from colonies in the 'new world'.


   The poor and sick became burdens. Henry VIII killed 72,000 of his own poor citizens and was the first monarch to cause a genocide of his own people. For the next few centuries the poor were made poorer. They were exported child labor (e.g., England's Barnardo children shipped to Ontario to serve as child labor from which 5% of Ontario's population now comes); and punished other poor people for being poor.


   In 1774, Nova Scotia passed “An act for punishing vagrants and other disorderly people” including 'lunatics'. Hospices were turned into prisons or public housing (in Paris the Salpetriere held 7,500 women and the Infirmaniere 7,000 men) with nurses or soldiers acting as guards. In 1842 Milledgeville, Georgia built and kept open an institution until the 1960s that housed 14,000 people. Poor infants in foundling homes were abandoned. Their death rates were: Venice 99.6% (1678); Dublin 98% (1700-1800); Paris 67% (1817).


   Professor Wolfensberger concludes that most small, well-run programs devolve, through societal and government pressure, into larger less effective and depersonalized care. Regardless of the founders' philosophy, principles and visions, these smaller organizations are forced to expand or they are taken over by larger organizations so that actual care of the patient and their families is diminished, depersonalized and often more tortuous than if you had left the people alone.


   He argues that government taking over the funding of services often leads to formalizing the care (i.e., standardizing care without concern for an individual's personal needs) to the extent that all emotional and spiritual supports are lost. The patients become objectified as a commodity (e.g., length of stay and beds become the statistics that matter rather than the name of the patient). The process becomes so bureaucratic and commercial that the humanity of care is lost. Modern technologies save countless people's lives but they also dehumanize the process of care so that a person is left alone in a room filled with machines and few humans.


  Furthermore, Professor Wolfsenberger concludes from his research that people in modern health care are devalued because they are ill, segregated away from their communities, and restricted in their capabilities to the point where it is deemed better for them to be confined (e.g., some nursing homes) rather than cared for in their own homes and community. All of these trends come with phenomenal expense although each step in the devolution of care is proposed as a cost cutting measure.


  He cites the 9,000 patients at the New York City Psychiatric Center (East River) as an example of this devolution of care. The patients were released into the community (cost cutting with the closing of the center) only to have them move back into the same building when the center was converted and re-opened as a homeless shelter (the biggest in the US) but now with few programs to treat 'residents'. On the one hand, the 'patients' were deinstitutionalized so they could be integrated into the 'community' only to have them return to their former institution where they would receive even less care.


   Wolfensberger suggests that the only way to honestly stem this devolution of care is to carefully note and expose the differences between how organizations define their services and what is actually delivered - i.e., by what they habitually do to their clients, not by what they say they do.


In Modern Terms

To help us understand what we do versus what we say we do in hospice and health care, go back to your answers to:


  1. 1.Have you been a patient before?

  2. 2.Would you like to be a patient again?

  3. 3.Have you have received home care before? Was it enough? Why or why not?

  4. 4.Would you recommend your work to your children? Why or why not?

  5. 5.Do you look forward to receiving the service you provide now to others and in the settings where you provide that service?


   These questions speak to what it feels like to be a patient/resident/client. In the original hospices where people were treated as the “hidden Christ,” their care would be something that people looked forward to. To have your own bed rather than share with five others and to have your food on silver plates rather than old broken clay plates was special. People were not afraid of these hospices as they might be of nursing homes or chronic care facilities today.


   Another aspect of the devolution of modern hospice care is the “turf wars” that go on between programs and services in the community and within the hospital. These “turf wars” complicate the effective treatment of patients and necessary cooperation between professionals, volunteers and agencies.


   Examination of some residential hospices will show that patients are becoming more and more objectified to the point of being a number and length-of-stay (LOS) estimate (hoping for short LOS versus encouraging their will to live a full life). The 'beds' must be full and so some patients are recommended to go to a freestanding hospice rather than stay in their own home. The assumption over time may be that dying in a hospice is good for some people and, therefore, dying there is probably good for everyone. Is this assumption accurate or even possible?


  Before World War II most people died at home. There were not the resources or facilities to have people die anywhere else. Many suffered unbearable pain and suffering at home while others had a peaceful death. After the war there was an excess amount of money as the economies began to boom with post-war reconstruction. There was a huge influx of funding into the building and staffing of community hospitals. Some people were admitted to hospital to receive better end-of-life care then was possible at home. Over a matter of only a few years this move to the hospital was no longer limited to the few who could benefit but rather presented as the only option for most people. By the time of the hospice movement began in the 1960s and 1970s in various communities, almost all people went to the hospital to die. What began as a service for a few, became the norm for almost everyone. The hospice movement began to return us to more home-care based community programs. That is changing as more communities are finding it easier to raise money for the “bricks and mortar” of a free-standing hospice than it is to raise money for community based programs with professional staff and volunteers going into people's homes. What about your program?


  An added difficulty for home-based care is that fewer families have an adult caregiver at home. More families have either a single parent or both parents working with formal day care and schools taking care of the children during the day. Extended families are smaller than ever with many siblings, aunts and uncles living in different cities and towns far away from the person needing care. If the person who is ill was also responsible for taking care of the family's children, then the parent(s) now have the double worry of who will care for the person who is ill and who will now care for the children during working hours.


  These historic trends that dehumanize patients and turn dying into a medical problem all lead to the perceived need for euthanasia (based on projected shortages of physicians, dollars, care facilities, care providers, improper pain control, prioritization of resources to meet other needs). One irony is that we turn to legal remedies that ask the physicians and health care systems that that cannot provide adequate hospice care to also be the guardians of providing euthanasia.


   We know that health outcomes are dependent on a patient's age, gender, economic background, education, language spoken, citizenship, skin color, sexual orientation and more6. Those that receive the best care are white, middle-upper class, educated, English-speaking, able-bodied, straight men and yet many of them receive inadequate care during their final illness.


   Understanding some of this history helps to caution us to the dangers of expanding small hospice palliative care programs into large, bureaucratic ones. We are in danger of doing exactly that as more programs are either begun or taken over by hospitals bringing community-based volunteers under their general volunteer programs and fundraising under the umbrella of hospital foundations. We are in danger of becoming another part of the health care industry rather than the movement designed to provide actual individualized, compassionate care where people are identified by their name and not by their health care number.


   We began the modern hospice movement in response to how poorly most people were dying. We concluded that the medical model of care was insufficient in meeting the needs of dying people and their families. We are now at the point in this short 40-year evolution where hospice palliative care may well join the medical model and lose its principles rather than, as intended, become the model that hospitals and other facilities should follow. We are losing our leadership role in order to get steady government or health care dollars. There will likely be an alternative hospice care movement if this trend away from meeting the individual needs of people who are dying and their families continues unchallenged.

Gift of Care


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Copyright © 2007, 2008 Harry van Bommel

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