Nora McKee, MD
Department of Academic Family Medicine
University of Saskatchewan
Although 90% of patients express a wish to die at home, how many actually do so?
Which medication side effects are important in palliative care?
What personal issues affect a physician's approach to palliative care?
This module discusses the role of palliative care services in our society, and the attitudes of our society to death and dying.
At the completion of this module the physician will be able to:
Prior to this century, and in the early 1900s life expectancy was short. Many women died in childbirth due to poor hygienic practices and the absence of antibiotics, there were no vaccines to combat common childhood infectious diseases, and people died quickly of infections or injuries. In the absence of tools for disease treatment, for example, intensive care units chemotherapy or mechanical ventilation, diagnosis of a serious illness was a death sentence. In this environment medicine focused on comfort and caring. Some religious houses offered shelter to those with no family support, but in most cases care was provided in the home.
Copulation and birth were unmentionable in polite society, and just as the cemetery occupied the centre of the village next to the church, death was a central topic of conversation. Since most people suffered their illnesses and died at home everyone had a personal experience of death and dying, in an old home generations of family members would have been born and died surrounded by their extended family.
The success experienced by medicine since the middle of the last century in treating many serious illnesses has resulted in a change of attitude. Physicians and patients alike celebrate the fact that they need not die of random infections and accidents, but as a corollary we have difficulty in accepting inescapable death. Treatment of major or incurable illness is seen in terms of a fight. Dylan Thomas grieved that his father went "silent into that dark night" and begged that he should "Rail against the fading of the light". We hear always of people who died "after a year-long battle with cancer". Productivity, youth and independence are valued, while aging and the interdependence of family in providing caring are devalued. We focus on science, technology and mass communication rather than the art of caring and communicating as individuals. Some even speak of a "death-free generation" i.e. one that is born, lives through infancy, childhood and adolescence, enters into adulthood, marries and has children all without experiencing the death of a significant, close family member.
Now in the early twenty-first century copulation is almost public property, birth is openly discussed and often witnessed, and public knowledge of violent death through wars, motor vehicle accidents, concentration camps and the fantasies offered through mass entertainment has increased in an unparalleled way. Yet the topic of individual death and dying has become the "unmentionable". Science has solved many puzzles of medicine, for example the code of the human genome, but death still remains a mystery. Perhaps medicine, like the rest of society, prefers to avoid or ignore this particular puzzle.
Physicians can often be involved in the cure of previously incurable disease, but along the way medicine can and often still does prolong living with difficult symptoms and increased suffering. Few people now die suddenly and quickly. Most experience a long period of decline or live with chronic illnesses and periodic crises. Although physicians must focus on the optimal survival of the patient, this often leads to the belief that death is always the "enemy" in the "battle".
The demographics of present day society show that most people live alone or as couples, family members are separated by geography, and by their own interests in "living their own lives". Family members living in close proximity are often frail, elderly or ill themselves and unable to share in care giving. The role of care giver usually falls to a woman who may be fully occupied with her own family, may have no specific experience or skill in caring for the ill and dying, and who may lack even the basic resources to care for a family member in her home or theirs. Financial pressures can be significant; in the United States a diagnosis of cancer may mean family bankruptcy. Although 90% of people state that they want to die at home in effect only 20% do. 57% die in hospital, 17% in nursing homes, and 6% elsewhere.
Palliative care is not new. It is as old as medicine itself. It is not care offered by a trained and selected few, but is provided by all caregivers. It emerged as a specialty in England 25-years ago as a response to the realization that the needs of the dying and their families were not being met, and it has been evolving ever since. The World Health Organization definition of palliative care is:
"The active, total care of patients whose disease is no longer responding to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with aggressive medical treatment."
The public expects good "end of life" care. Physicians recognize, at least at an intellectual level, that all of our patients will die, and all specialties deal with death or with serious life-altering illness in some way. Regrettably those who dispense that care often have no formal training. In the United States only four of 126 medical schools reported a separate, palliative care course in their curricula.
"People's medical training acts as a filter through which too often they can see only curative or life-prolonging options. When I explain end-of-life care to church groups or service groups, such as Kiwanis or the Rotary, or to undergraduate students, they tend to get the idea immediately. It is not that they know more, but rather that they have to unlearn so much less."
Issues that can become part and parcel of discussion of palliative care are:
Very ill patients may make requests of their physician to consider these options. While the requests may be the rational result of long consideration and planning, the physician must always remember that they will more often be made due to:
The principles of palliative care are directed to meet these underlying, and often unexpressed, concerns. Palliative care attempts to address the physical, psychological, social and spiritual needs of the patient and family. In palliative care the family is the unit of care and that care is provided by an interdisciplinary team, which embraces all levels of service providers with programs coordinated to facilitate the continuum of care.
Workers in palliative care advocate a quality of life as defined by the patient, with equal and timely access to services based on prioritized need. As well as support for the family in the lifetime of the patient, bereavement follow-up is offered. Team members involved in offering palliative care services include nurses, physicians, social workers, pharmacists, volunteers, clergy, members of the Home Care team, ethicists, students, physiotherapists, nutritionists, and massage and ostomy therapists.
Palliative care has tended to develop autonomously in several areas of the province, as an example, this is the developmental timeline in Saskatoon.
|1980||Humanitas, Inc. formed|
|1983||Palliative Home Care Project|
|1985||St.Paul's Hospital Palliative Care Consultation Team|
|1990||12 bed regional Palliative Care Unit St Paul's Hospital|
|1990||Palliative Care Consultation Teams and City Hospital and Royal University Hospital|
|2003||Re-organization of Palliative Care and Home Care within Saskatoon Health Region with four beds available in long term care facilities.|
The Provincial Government has also become a part of overall palliative care services providing:
Although pain is not the predominant symptom in terminal states (loss of strength, feebleness and weakness are described more often), the World Health Organization estimates that 80% of the 5 million people who die from cancer annually die with uncontrolled pain. Since 70% of patients with advanced cancer have pain, that suggests that physicians approaches to pain management in palliative care is far from ideal.
In local practice, many effective analgesics are freely available and failure to adequately control pain is often due to physicians lack of knowledge about pain, especially its assessment and treatment, and also to adherence to the "disease centred" model of care in which physicians are accustomed to working, rather than the "symptom centred" model or care which is the principle of palliation. In addition, there are biases and fear on the part of physicians, patients and families toward the use of opioid analgesia.
For physicians much of the discomfort around treating pain in the palliative care situation is fed by discomfort in communicating bad news, i.e. although symptoms can be treated there is no longer an effective curative treatment. Many physicians lack skills in negotiating goals of care with the patient, and are not sure of their skills in meeting the patients needs, partly due to the lack of appropriate clinical role models in training and in continuing professional development and partly due to the lack of consultation services in many areas.
Patients and families express concerns about side effects of confusion, constipation and sedation, and many physicians are uncomfortable in discussion of managing these effects. Unreasonable concerns about addiction have also been issues, as has the belief that pain is an inevitable complication of cancer, and that the use of opioids in the early stages of disease does not allow for pain control later on, and in fact represents the "end of the road".
Pain in any situation is an unpleasant sensory and emotional experience, but in the context of a terminal disease the experience of pain is related not only to somatic factors but also to many powerful psychological and subjective factors.
Pain is what the patient says it is, not what others think it should be.
The components of "Total Pain" are:
The role of members of the palliative care team is not only to treat the patients symptoms, it is also to support family members as death approaches. To this end caregivers need to know what changes to expect towards the end of life. There are no absolute prognostic signs (see article on Communicating Prognosis), but some signs alert the team to prepare for the death of the patient.
These symptoms will gradually progress to the moment of death, which may be difficult to pinpoint in real time. In many cases physicians are not called upon to pronounce death until it is very obvious, but in the situations where the physician is involved at the time of death these steps should be taken:
At the time of death the members of the palliative care team need to complete the care that has been provided by dealing with many of the legal and practical issues that surround death in our society. It is sometimes necessary to arrange a time and place where members of the family can be informed of the details of the death and occasionally to agree to an autopsy. Although other health care workers can and do pronounce death the registration of the death, must be made by a physician by completing the death certificate.
The care of the patient and family through dying and death is a complex issue in palliative care, involving symptom management, emotional and practical support, and a thorough knowledge of the services available for the dying patient. They do not only provide support to their patients but can receive support themselves by being involved with a palliative care team approach.
The Case of Mrs. A.J.
Mrs. A.J. was an 84-year old woman hospitalized with respiratory failure related to pulmonary fibrosis of unknown cause. On admission she was very weak and was essentially bed bound. She ate very little even with coaxing and even when her favorite foods were brought from home. Her family visited frequently but they were quite, seemed angry and did not ask many questions about her care.
A discussion was held with her family on admission and they requested all aggressive therapy be given. Since a specific cause for her respiratory difficulties had never been found, they were still hopeful for a cure. IV fluids were given throughout her stay but her veins were fragile and the line needed to be restarted frequently. She was also diabetic and required frequent glucose monitoring and then small doses of insulin were given by sliding scale. Her sodium was noted to be low so fluid and electrolyte changes were initiated frequently. Some days she had phlebotomy draw blood three times per day.
Because of her poor caloric intake, Nutrition Services were consulted and they suggested she have either a nasogastric tube feed or TPN (total parenteral nutrition). To provide the TPN, insertion of a central line was attempted but was difficult so an NG tube was used for enteral feeding.
Mrs. A.J. began to have confusion at night and would pull at her tubes so at times her arms were restrained. She began asking the nurses to stop given her so many needle pokes. Since her breathing was labored, a junior resident had questioned if she could have sedatives or perhaps something for discomfort, but it was felt the medications may suppress her respiratory drive.
As her condition worsened she required transfer to ICU and ventilation. The tube feeds had to be discontinued because she developed an aspiratrion pneumonia and then needed antibiotics. The ICU team tried to enter in to discussions with the family about ceasing treatment but they were resistant and still seemed angry.
Mrs. A.J. stopped breathing suddenly during the night with no family members present. CPR was performed for ten minutes with no response. The family never hears from the caregivers in follow up and they remain angry but the reasons remain unknown.
What could have made a "better" death for Mrs. A.J.? What principles of palliative care could have been used to improve her situation?
The Case of Mrs. L.M.
Mrs. L.M. was a 46-year old woman admitted to Royal University Hospital under gynecology oncology from a rural Saskatchewan hospital where she had been visiting family. Five years preceding this she had had a hysterectomy for menorrhagia. The pathology specimen revealed cervical cancer despite the fact her PAP smear had always been normal. She had a metastatic recurrence two years ago on the left pelvic wall. She had surgery at that time and a radiotherapy implant done in Edmonton.
She had been admitted to the rural hospital with pain and naseau and referred in for a CT scan and possible chemotherapy. She was married and living in Saskatoon with her four children, a daughter and three sons (whom had all been diagnosed with ADD).
On admission her medications included: MS Contin 30 mg po bid, Gravel 25 to 50 mg IV q4h prn, (used five times in the past 24-hours), Colace 100 mg po prn, Morphine IR 10 mg po q2H prn (used ten times in the past 24-hours), Lorazepam 1 mg po at hs prn.
On initial assessment she rated her pain 8/10 and 10/1 with movement. The pain was in her pelvis and left hip, aching and constant with occasional exacerbation. There was no radiation of pain into her leg. She was having nausea, which was controlled by the use of Gravol, but she had to use it frequently. She had had a bowel movement two days previous. On exam she looked well hydrated and was clear minded during history taking.
When suggestions in regards to symptom management was made, Mrs. L.M. sated she did not want to use more Morphine because the rural doctor had told her that if she used more she would become addicted. Her parents also stated they didn't want her to take any of the MS Contin because they felt it was making her too drowsy. She actually was very resistant to seeing the Palliative Care Team because she still wanted active treatment.
The Team listened to her concerns and those of her family. In a family meeting the philosophy of palliative care was discussed and it was explained that both treatment of disease and treatment of symptoms can occur simultaneously. Since she was tolerating Morphine well with few side effects it was decided to continue MS Contin. The physician involved felt her drowsiness may have been more a factor related to the frequent doses of Morphine IR and heavy use of Gravol. The difference between tolerance and addiction were discussed. Since her total dose of Morphine used in 24-hours was 160 mg, MS Contin 75 mg po bid was initiated. The breakthrough dose of Morphine IR was increased to 16 to 24 mg po q1h prn (the breakthrough dose should be 10 to 20% of the total regular daily dose). Maxeran 10 mg po qid regularly was started to treat nausea so the Gravol could be decreased. The Cancer Centre saw Mrs. L.M. and chemotherapy was initiated because evidence was found of metastatic disease. On discharge the MS Contin dose was 90 mg po bid. She still suffered from a level of sedation but she rated her pain at 2-3/10. Ritalin can be used for the sedation of opioids but she refused. Her sons had been treated in the past with Ritalin and she had some preconceived biases. She was willing to have the Palliative Home Care nurses follow her at home for symptom management now that she understood the service.
Six months later Mrs. L.M. was admitted to St. Paul's Hospital. She was admitted primarily for symptom management but there were no beds in the Palliative Care Unit so she was given a bed in the orthopedic ward. Recently she had developed a new pain radiating down her left leg. It was described as sharp, electric in nature and burning. The Cancer Centre had recently done a bone scan, which reported lytic lesions in the iliac crest and pelvic rami, as well as suspicious areas in the lumbar spine. She had been told two weeks previous that there was no further chemotherapy available and her disease was advancing. She was on the waiting list to have radiotherapy to her pelvis. Forty-eight hours before admission she was noted to have confused speed. She was picking up objects in the air and seeing people in her room that were not present. She had also been vomiting and had had no bowel movement in six days. Her family reported she was eating very little. She had a very dry oral mucosa and was having problems swallowing oral meds.
On admission her medications included: MS Contin 200 mg po tid, Dilaudid Contin 9 mg po bid (added in the last two days) Morphine IR 20 mg po q1h prn for breakthrough (six doses used in the last 24-hours), Maxeran 10 mg po qid. Initial admission blood work revealed she was in acute renal failure with a creatinine of 312. A renal ultrasound showed a L hydronephrosis and urology was consulted.
The palliative care team felt Mrs. L.M. was suffering from delirium and felt the cause should be investigated. Her serum calcium was normal. Doing a CT scan to look for brain metastasis was considered. Once it was determined she was in renal failure it was decided to rotate narcotics and avoid Morphine. The metabolites of Morphine can rapidly accumulate in renal failure and are a common cause of delirium. She was hydrated with a sc infusion of fluids because IV access was difficult. Fluids can be given by this route at a maximum of 30 to 40 mls/hour. Urology placed a percutaneous stent, which led to rapid resolution of her obstructive uropahy. It was felt the obstruction was related to her extensive pelvic mets, so radiation oncology was consulted on an urgent basis.
Her family doctor had added oral Dilaudid before admission in an attempt to address her escalating pain needs. Having two narcotics used simultaneously can be confusing in the case of delirium, because it is hard to determine which is the causative agent. In this case it was felt to be the Morphone so Dilaudid was initiated as a sc infusion and iterated up to control pain. Because her pain was not neuropathic in nature and adjunct was added, Elavil 10 mg po at hs. NSAIDS can be useful in bony pain but must be used with caution in renal failure.
Once the dose of narcotic required was determined, Mrs. L.M. was rotated to a Fentanyl patch in an equianalgisic dose. This was chosen because her nausea persisted and the use of the oral route was unpredictable. Her mentation returned to normal quite rapidly and radiotherapy was initiated. She was able to be discharged home with Palliative Home Care with a plan to re-admit to the Palliative Care Unit if care at home became to difficult. A volunteer from the PCU was matched with the family to follow them and give support at home.
Mrs. L.M.'s last admission was initiated from home because she was unresponsive. There was a bed available in the PUC the day her family requested assistance. She had steadily been deteriorating over a two-week period. Her family was very distraught, especially her daughter as she had been acting as caregiver for her mother and for the younger children.
On initial assessment she was noted to have rattling respirations when lying on her left side. She had periods of restlessness and moaning. She had not eaten for two days and her parents were requesting some form of feeding be initiated. Her family agreed with a Do Not Resuscitate order but they were not sure that is what Mrs. L.M. would have wanted, as they had not discussed the issue with her.
The Fentanyl patch was continued for pain and Dilaudid was given PRN for the restless periods. A Scopolamine patch was applied to ease the death rattle. Versed was given sc for terminal restlessness. A family meeting was held to discuss end of life issues. It was discussed that feeding methods at the end of life often led to more discomfort than benefit. Her family requested fluids be given and a sc infusion was initiated at a low rate so as not to worsen her rattling respirations. The futility of resuscitative efforts at the end of life was also discussed.
In the last 24-hours of life she seemed in pain and required an infusion of Dilaudid and frequent doses of Versed. Mrs. L.M. died one week after admission. The family was followed up by the bereavement volunteer program and counseling from the PCU social worker whom works specially with children.
What was better about this case? What principles of Palliative Care were in evident?