Everyone, regardless of age, should have the right to try — not just the duty to die.
All of us, from the very young to the very old, and everyone in between, should have the right to try — not just the duty to die. We should never be confronted by a healthcare culture that makes us feel like we have an obligation to give up and make room for others more worthy. But time and again, that is what is done in our healthcare systems. It was done to my mother during her hospital ordeal, too.
Patients and families report that they have encountered a mindset of ageism on the part of healthcare professionals. This occurs when “advanced” age is used as the reason to not perform certain tests, to not follow best practices and recommended protocols, or, in the worst situations, to not provide treatment at all. And it is not just those in the advanced stages of life who are vulnerable to ageism. Some healthcare providers and insurers refuse certain therapies and rehabilitation services, such as brain recovery programs, to anyone over the age of 65.
While such attitudes have no place in the hospital setting, we know from personal experience, and the parade of anecdotal evidence, that they are present far more often than most of us realize. When ageism raises its head, it can often lead to painful complications that might otherwise be avoided.
Consider the case of Lorraine Finlay, mother of The Center for Patient Protection’s founder. At the time, Lorraine was 89. Following a catastrophic brain injury, she was transferred to Canada’s largest academic hospital. Within her first weeks, she began to make significant recovery. Then an avoidable medical error caused her to suffer a cardiac arrest.
While she was revived, her medical team was so steadfast in their negative assessment of her prognosis that one of the hospital’s most senior administrative nurses advised the family while Lorraine was in the cardiac ICU that “there are ways” to hasten her end, if the family wished it. Despite raising concerns in succeeding months and years with the hospital’s senior management, with the Local Health Integration Network (as it was then) and with Ontario’s Minister of Health, regarding the alarming implications of this attitude, there was never any response, let alone repudiation of this approach. One worries that it is far more common with the vulnerable and the aged than is realized. Inattention to her care in a hospital that teaches future doctors showed up in other ways.
After Lorraine’s cardiac arrest, and without her family’s consent, she was given strong opioid medication that was causing her to be unresponsive. As noted above, it was a medication error, involving a high-risk drug never agreed to by the family, that caused the cardiac arrest. The use of other medications causing Lorraine to be in a near-comatose state was extremely unsettling to the family. A doctor was summoned at the family’s request.
Rather than explaining why the medication was necessary, or why informed consent had not been sought or obtained, the young doctor proceeded to reprimand the family for questioning medical judgments. He reminded them that none of them was trained in medicine. He told the family if they didn’t like the care the patient was receiving, they should remove her from the hospital immediately. There was a severe winter snowstorm outside. The clock had just struck midnight. It was Lorraine’s 89th birthday. No apology was ever offered for the inappropriate comments made by this doctor or for his failure to obtain informed family consent.
Hard as it is to believe, it was just one more stressful day and night for a family doing their best to ensure that an elderly loved one was not harmed in a healthcare institution that was supposed to be delivering healing.
On another occasion a few weeks later, the family arrived in Lorraine’s hospital room to find her extremely agitated. The cardiac monitor had been switched off. The cork to her tracheostomy was missing and could not be found anywhere in the room. The oxygen tube connected to her tracheostomy was on the ground, spewing oxygen into the air. The observer/PSW who was in the room for the purposes of ensuring Lorraine’s safety over night was asleep. Despite this incident being immediately drawn to the attention of nursing staff, no record of it ever appears in her medical chart. No explanation or apology was ever offered. When hospital administration was questioned about it later, they denied it ever occurred.
Three months into her hospitalization, Lorraine was transferred to a hospital closer to home. There were constant references, delivered in a heavy-handed and insensitive manner, to Lorraine’s advanced age, to the high cost of her care, and to what was called the “unreasonable expectations of her family” for recovery. It became very clear that the healthcare professionals delivering Lorraine’s care strongly resented the family’s desire that she be given the opportunity to recover as much as her potential allowed, and their refusal to consent to a do not resuscitate (DNR) order.
Unbelievably, her chart later revealed that medical staff had cited the refusal to agree to a DNR order as a reason for the slowness in freeing up her hospital bed for others.
This ageism bias was also reflected in serious breakdowns in care and a succession of painful, life-threatening medical errors. Inattention to danger signs in high blood pressure, and abrupt withdrawal of anti-seizure medication, led to a major convulsive seizure. The care team had been completely oblivious to the concerns the family expressed about her deteriorating condition prior to the seizure. Concern about the quality of Lorraine’s care, and fear of ongoing breakdowns in patient safety, required the family to remain at Lorraine’s bedside almost constantly. Had the family not been present to summon immediate code help when her seizure began, it is unlikely that she would have survived that event.
Significant as the seizure was, it took 24 hours before a doctor bothered to examine her, despite repeated pleas by the family for earlier intervention. No lab or neurological tests were ever performed, contrary to recommended post-seizure protocols.
On another occasion, Lorraine’s prescription medications, including crushed pills and a liquid suspension, were left out in the open for several hours in a busy corridor outside her hospital room. After waiting for more than three hours for the nurse to appear, the family attempted to locate her. When questioned about the safety of leaving medication accessible to others in the hallway, she responded with a sneering tone, “You just want everything to be so perfect for your mother, don’t you?”
An examination of Lorraine’s chart after her discharge revealed hundreds of errors in the administration of medication. An investigation by the Ontario College of Pharmacists also revealed that for the time of Lorraine’s stay, if not longer, an unregulated and unsupervised pharmacy assistant was dispensing prescription medication to patients without required oversight and sign offs by a licensed pharmacist. The hospital, and officials with Ontario’s Ministry of Health, refused to investigate how many, and in what way, patients might have been harmed by this breakdown.
Toward the end of her three-month stay, Lorraine was malnourished (despite having a feeding tube) and suffering from painful pressure ulcers because of neglect and inattention to mandatory standards of care. When she developed aspiration pneumonia, a specialist denied her access to the hospital’s ICU, telling her family, “What’s the point? Her demise is imminent anyway.” Once again, a key member of Lorraine’s care team expressed resentment that the family was refusing repeated requests for a DNR order.
The doctor also refused to authorize respiratory therapy to assist with her laboured breathing, thereby attempting to thwart the family’s refusal to grant a DNR order and their expressed hope for her recovery.
So resentful was Lorraine’s care team about the family’s insistence on full code status and that all recommended protocols for her care be observed, that, in an effort to smear and discredit the family, a doctor lied in her chart notes that a member of Lorraine’s family had “shoved” her out of the patient’s room. It would be impossible to overstate the trauma the family felt on reading this entry in the chart, which took months, repeated efforts and several hundred dollars to obtain. It then took years, and a complaint to the College of Physicians and Surgeons of Ontario, for the doctor to finally admit the allegation she made was false and that no physical contact with the family had ever occurred. Apparently so common are such derogatory attacks on family members and patients that the College merely reminded the doctor to make “accurate” notes in the future.
Lorraine miraculously survived these and so many other hospital ordeals. Horrific as these incidents were, they were just the tip of the iceberg when it came to avoidable injuries to the patient and emotional harm to the family by a healthcare culture that is too often motivated by age bias. As Kathleen Finlay has called them, these are the Thieves of Hope that have no place in a caring and compassionate healthcare system.
Lorraine went on to live another six years and enjoyed a recovery that set medical records for a person of her age and injuries. As Lorraine said when she later learned of the dismal prognosis she had been given, “Well, they were wrong, weren’t they?” That’s not bad for someone the “experts” said had too much brain damage to ever talk again. In fact, Lorraine went on to talk, sing and read her favorite poetry. She learned to walk again with assistance. She migrated from a stomach feeding tube to being able to enjoy full meals with her family. She took pleasure in a life of family love, her beloved garden and her pets. This was the recovery that countless experienced clinicians at two hospitals repeatedly warned would never occur because of her age.
Part of Lorraine’s story was chronicled in the Medscape article, Doctor, Don’t Give Up on Me, as well as in a series of contributions by Kathleen Finlay in The Huffington Post.
Age alone should never be used as the reason for pressuring a patient and family to give up, or for denying care. But cost pressures in hospitals are causing many to consider — though none will admit this —the rationing or limiting of care to the elderly. We have seen the consequences of this attitude and we have also seen how wrong clinicians can be when they pronounce an elderly patient past the point of benefiting from more aggressive therapy.
Hospitals and clinicians who practice ageism do a terrible injustice to the elderly, their families and society. All of us, from the very young to the very old, and everyone in between, should have the right to try. Too often healthcare professionals treat patients as statistics while dismissing the healing powers of hope and faith and the indomitable nature of the human spirit to live. We should never be confronted by a healthcare culture that deprives us of a right to try and instead imposes a duty to die.
The Center for Patient Protection is proud to wage a robust campaign to raise awareness about the dangers of this form of healthcare discrimination, and encourages patients and families who have experienced it to continue to report such incidents and to make use of The Center’s Hospital Incident Report.
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Keep Ageism Out of the Hospital
(Kathleen Finlay’s column in The Huffington Post)
What is Ageism?
After being diagnosed with a disease that may be potentially curable, older people are further discriminated against. Though there may be surgeries or operations with high survival rates that might cure their condition, older patients are less likely than younger patients to receive all the necessary treatments. For example, health professionals pursue less aggressive treatment options in older patients,[40] and fewer adults are enrolled in tests of new prescription drugs.[41] It has been posited that this is because doctors fear their older patients are not physically strong enough to tolerate the curative treatments and are more likely to have complications during surgery that may end in death.
Other research studies have been done with patients with heart disease, and, in these cases, the older patients were still less likely to receive further tests or treatments, independent of the severity of their health problems. Thus, the approach to the treatment of older people is concentrated on managing the disease rather than preventing or curing it. This is based on the stereotype that it is the natural process of aging for the quality of health to decrease, and, therefore, there is no point in attempting to prevent the inevitable decline of old age.[38][39]
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From an Article By Brian Goldman, M.D.
Ageism is rampant in the culture of medicine, just as it is in society in general. Studies show that seniors with heart attacks are less likely to get angioplasty or coronary bypass, and if they do receive these invasive interventions, they often wait significantly longer than patients half their age. “If I’ve got a 50-year-old and a 92-year-old in the resuscitation room and both need my attention, I help the 50-year-old first,” a colleague once told me. “Sometimes, you’ve got to make choices.”