Manejo de identidad cultural en personajes famosos

“Prolonged hospitalization often has devastating effect. Elderly persons rarely return home at the level of functioning of when they were first admitted. With bed rails up, and intravenous lines in, patients become bed ridden and deconditioned. On admission basic accessories such as glasses, canes or hearing aids are often forgotten, or worse, these articles are lost in the numerous transfers around the hospital that a patient endures. The nutritional status of patients often deteriorates over the course of their hospital stay due to declines in psychological well-being, difficulties in accessing food in sealed containers, or aversion to the taste and presentation of hospital food. A lack of coordination among the staff (e.g. untimely checking of vital signs or transferring patients in the middle of the night) can disturb sleep patterns and make it harder for the patient to function normally. Often the patient is so weakened that they cannot go home even after a medical crisis is resolved. Although attention to these details will help prevent deterioration, the benefits of keeping patients at home or shortening their hospital stay should not be underestimated.”

Dr. Ramona Coelho – Montreal Round Table Dec. 17, 2010

Home Care:

Home care is foundational to transforming Canada’s health care system. In reality it is a paradigm shift in our vision of health care. Allowing patients to stay at home has pronounced benefits for everyone involved, not least of which, the person being cared for in their own home and community. This is important as our nation seeks ways to improve the care of the elderly and vulnerable.

Hospital based acute care service had built up an institutional understanding of providing all encompassing care. This perspective needs to be reconsidered. A continuing care system can relieve burdens on the acute care system, in a way that doesn’t harm quality of care and perhaps even enhances it. This is not to deny the importance of surgical, diagnostic and specialist interventions, clearly the domain of the hospital. We now know that the majority of care that can be delivered to a person with chronic conditions in an institution can be delivered just as well at home. Home, family and community are too fundamental to the identity of the person, to be ignored in the basic care of the chronically ill or dying person.

Allowing patients to stay as long as possible in their home is a wise, compassionate choice, which should become a goal of public policy. The Romanow report noted the importance of developing home care to meet the needs of people for: a) short term post acute care, b) Palliative care, and c) mental health intervention and support. The Committee endorses these recommendations; but adds the important role of long term home care as a support for persons with disabilities and for persons with persistent chronic conditions.

“We need a well-planned expansion of homecare and education of health care workers especially in years to come. Creative collaborative systems of home and institutional care may actually relieve pressure on our public health care system. According to a SIPA research program conducted in Montreal, increasing, homecare services decreases or shortens hospitalizations and improves the patient’s, as well as their families’ quality of life.”Dr. Ramona Coelho – Montreal

In the late 1970s New York State developed an innovative program called Nursing Home without walls (NHWW). “The goal of NHWW is to reduce the human and fiscal costs involved in institutionalizing chronically ill persons while increasing the quality of life for individuals.” 91

53 The fundamental idea was that NHWW home based programs should replace institutional care. Many argued against this holding that the approach would not be cost effective, would not provide adequate care, etc. Home care it was argued would not fit within the model of economies of scale. As Dr. Paul Sinclair notes however:

“While an institutional system dominates the landscape and a community-based system has to be built up, naturally the institutional system appears most cost-effective. This pretence of economy can then sideline the ethical imperative to address social devaluation, while community support alternatives are portrayed as unproven, simplistic and financially and clinically irresponsible.” He goes on to note that “those for whom it is claimed institutional care is absolutely essential are the very people who benefit most from non-institutional care. Not only do the smallest improvements in care make the most difference for people with high support needs, but also it is they who suffer most from institutional care, especially via neglect and abuse.”92

Despite the gainsayers, Miller and Lombardi note that the Nursing Home Without walls program consistently cost about half of traditional institutional care.93

“The practical achievement of NHWW with those with high support needs is impressive. Of NHWW patients, 46% live alone (Miller and Lombardi, 1991, p. 142). Miller and Lombardi describe a couple in their early sixties – the wife with ‘multiple myeloma and bone tumours that caused spontaneous bone fractures’, the husband with cancer of the colon requiring twice weekly chemotherapy. Nursing Home Without walls provided ‘personal care 12 hours a day, 7 days a week, and weekly nursing visits to monitor their physical condition. The NHWW nutritionist assisted with special diets, and a social worker provided supportive counselling’. The wife also received physiotherapy and both had emergency response alarms. ‘The husband and wife were able to remain in their home together despite the seriousness of their illnesses, until they passed away within weeks of each other.”94

New York State adopted this innovative approach in 1977. It proved efficient, cost effective, and most importantly good for patients and families. Nursing Home without walls (NHWW) is one of many successful homecare programs found throughout the world, including Canada.

Another story of success was shared with the committee by a woman from Guelph Ontario. Her mother was able to die at home surrounded by her loved ones thanks to the excellent home care system in her native England.

“We were blessed to have the medical and care support that enabled mummy to die at home in her own bedroom. Each day brought its own laughter, tension and tears... These last days were the worst and the best that you could possibly want but the awesome opportunity to care for our mother in this way is a treasure that every child should experience. I had the extra gift of holding my mother’s hand as she died. I kissed her into heaven and my heart was filled with an indescribable peace. Our family spent five hours with Mummy after her death - crying, laughing, sharing stories about the last few days and our childhood. ...Mummy died at 12.25am on December 10th 2007 and we talked together in her room until 5.30am when she was taken from us physically. I think letting her go was the hardest - it finally made it real. ... Dying is a process and families need to be free to be able to make the ever changing arrangements necessary for the best care for the person dying and for themselves. For our family it meant being able to be together to discuss the options with our mother. Mummy was adamant that she should stay at home, yet each of us had professions and families and timetables of our own. We had to learn that you can still care for someone, even if you cannot do the caring yourself. One of my sisters had wanted to look after my mother’s personal care but it became very difficult both for the parent and the child. We thank God that the government covered personal care help in my mother’s home. Care-givers came in three times a day to look after my mother’s personal needs. While my mother was unsure at first she very soon became accustomed and welcomed these wonderful women into her life.”

The family was able to enter more deeply into their mother’s final days because:

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• a 1 800 health help line was available

• the family physician would call on their mother after surgery hours

• a physician was on call every night to assist and give extra pain management if needed

• district health nurse teams would respond as often as needed day or night.

• access to needed drugs was possible at all times.

“Our family was supported and cared for by the whole team. On more than one occasion after some especially gruelling night or day the physician would take me aside and make sure that our family was managing. We experienced what every family should who are going through this difficult time and the reason we survived was because we had the medical and personal support at home. I will remember forever the day that Mummy was told that she would be cared for at home - her smile was angelic! The only bleep came when she had to change her bed for a hospital one - but we soon got over that. If I can personally ask anything of this Committee it would be to ensure that children, no matter how old they are, can remain children when they are losing their parent. While I have performed any and every service that my mother needed willingly - there is a real sense of freedom for patient and family when certain personal care is performed by others. I would wish the system our family experienced in England could be available in Canada.”Jakki Jeffs – Guelph Ontario95

It is time that Canada seriously studies the many models of success in home delivered health care, and begins to emulate these successes as we commence the vitally needed transformation of our health care system. Sadly, as with palliative care;

“Home care is not recognized as an essential service in the Canada Health Act – without a federal framework there is a wide variability in eligibility, access and services across Canada. The belief in a social safety net is a unifying value for Canadians; however, there is no national framework to assure access to homecare across the country. The Canadian Home Care Association believes that in order to achieve Canada’s Health policy objective ‘to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers’, harmonized principles that reflect Canadian values of equity and solidarity must be developed for home care. Our elderly and vulnerable populations need to be assured care, and with the growing reliance on home care within our health system, it is time for a nationally defined home care system.”Canadian Home Care Association96

Several important recommendations were made to the committee in regards to home care.

• It was recommended that the federal, provincial and territorial governments identify home care as a priority in health care discussions, particularly making the implementation of a comprehensive, national approach to home and community care a major focus of the 2014 National Health Accord.

• It was further recommended that the federal government should establish a five year Health and Social care transition fund to assist provinces and territories in realigning the health care system to meet the needs of an aging population and an increase in chronic disease rates. This funding would be directed towards communities, in the transition process, and towards alternative settings of care; such as residential hospice and home care services.

• In addition the committee heard the recommendation that the federal, provincial and territorial governments in collaboration with the NGO stakeholders establish a working group to develop and implement a comprehensive, national approach to home and community care. This working group would work towards a national strategy, minimum standards and bench marks, to form the basis of a National Home and Community Care Accord to be established by all levels of government.

• Other stakeholders recommended that the federal government establish a University Health Policy research chair in Home and Integrated Community Care, in each of the five major regions of the country. (Atlantic region, Quebec, Ontario, Western provinces, and B.C.) The purpose of

55 these endowed chairs would be to study the implementation and ongoing continuity of effective home and continuous care programs across the country.

• It was recommended that the federal, provincial, and territorial governments work together to create and implement a technology strategy for the home and community care sector, a strategy which would include:

i) Target funding for construction of housing units for low income seniors and persons with disabilities using “smart” technology to enable accessible and efficient home care support. ii) Extending a GST rebate to health care organizations that invest in “point of care” technology

(hardware and software) that improves the cost efficiency and effectiveness of care.

iii)Expanding broad band coverage in rural and remote communities to ensure access to communication technology to deliver safe and effective remote monitoring and communication, in the home and community care sector.

“Individuals living at home with chronic conditions incur substantial expense and physical stress when they need medical attention. Alternately, health authorities incur substantial travel costs sending staff to visit individuals in their homes. There are a variety of technological supports that can reduce the cost of community supports, such as access to quality health information, remote monitoring of health outcomes, and telephone support. ... Individuals want access to tools to help them manage their own health. VON has successfully implemented pilot projects in other jurisdictions with promising results. Improvements in the health outcomes of the client and reduced health care utilization have produced cost savings to the system. We have found investing in technology can be care-effective as well as cost-efficient.” Victorian Order of Nurses97

The committee also heardtherecommendation that the government of Canada utilize tax levers to relieve the excessive financial burdens of home based care, including:

i) Tax credits for care givers

ii) Establishment of a savings vehicle that will facilitate the ability of individuals to access the services that will allow them to remain at home – i.e. a Registered Chronic Care Savings Plan (RCCSP). Such a plan, with tax benefits and cost sharing considerations similar to the RRSP would allow individuals to share in addressing their future needs. The RCCSP would be introduced as a new program with tax relief on contribution, and not being taxed on withdrawal. Should the individual pre-decease utilization, the funds would form part of the estate and be taxable.

“The current state of the provision of care in home and long-term care falls far short of what Canadians expect and need. Due to a fractured system of services, and the absence of a national strategy and standards, many Canadian seniors, people with disabilities and chronic disease, and those in need of post-acute care are falling through the cracks when it comes to a continuum of care – assisted living, palliative care, home care, long-term residential care, pharmacare, respite care and support for informal caregivers. Gaps in the health system leave those in need of care trying to navigate the system to get the care they need at a time when they are ill and most vulnerable.”Canadian Health Coalition98