Palliative and EOL definitions and core concepts
Cultural, Psychosocial and Spiritual issues in death
Legal aspects of EOL care (Advance Directives, Living Wills, Substitute Decision-Making, Power of Attorney)
The sad story of Samuel Golubchuk
Grief counselling: the physician's role
Resources in other themes:
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End of life care: End of life care refers to formal and informal care provided during the final year of life. It includes, but is not limited to, palliative care. Because the end of life can be difficult to predict, “end of life” care may last less than a year or stretch longer than a year.
Palliative Care: Palliative care is a major component of broader end of life care. Palliative care:
- affirms life and regards dying as a normal process
- neither hastens nor postpones death
- provides relief from pain and other distressing symptoms
- integrates the psychological and spiritual aspects of care
- offers a support system to help patients live as actively as possible until death
- offers a support system to help the family cope during the patient’s illness and in their own bereavement.
WHO Definition of Palliative Care: "The active and total care of patients whose disease is not responsive 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 anti-cancer treatment."
A report from the Public Health Agency of Canada "Progress Report on Cancer Control in Canada" describes palliative care programs; about 75% of their activity is labeled "bereavement support"; 57% is "home consultation"; 48% "home care services" and 38% "social support".
The Canadian Palliative Care Association definition of Palliative Care is:
" ... the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with a life-threatening illness. During periods of illness and bereavement, palliative care strives to meet physical, psychological, social and spiritual expectations and needs, while remaining sensitive to personal, cultural and religious values, beliefs and practices. Palliative care may be combined with therapies aimed at reducing or curing the illness, or it may be the total focus of care.
"Palliative care is planned and delivered through the collaborative efforts of an interdisciplinary team including the individual, family, caregivers and service providers. It should be available to the individual and his/her family at any time during the illness trajectory and bereavement.
"While many service providers may be able to deliver some of the therapies that provide comfort and support, the services of a specialized palliative care program may be required as the degree of distress, discomfort and dysfunction increases.
"Integral to effective palliative care is the provision of opportunity and support for the caregivers and service providers to work through their own emotions and grief related to the care they are providing"
(Canadian Palliative Care Assoc. Palliative care: Towards a consensus in standardized principles of practice. Ferris FD, Cummings I, editors. ISBN: 1-896495-00-1. 1995. Ottawa, The Canadian Palliative Care Association).
Medicalization of Dying
Ivan Illich attacked the medicalization of dying in the 1970s. He argued that society was losing its capacity to accept death and suffering as meaningful aspects of life; he saw medicine as leading a ‘total war’ against death; this was crippling family care and devaluing the rituals surrounding dying and death. (Limits to medicine. London: Marion Boyars, 1976). This attack contributed to the development of a softer medical approach to the acceptance of death (see D. Clark. BMJ 2002; 324:905-907).
Euthanasia: The administration of lethal drugs with the explicit intention of ending a patient’s life, usually at the patient’s explicit request
- Non-voluntary: Person is incapable of giving consent (e.g. severe dementia)
- Involuntary: Against person’s wish
- Voluntary: With patient’s consent.
Assisted suicide: Supply of lethal drugs with the intention of enabling the patient to end their life
- Physician-assisted suicide: Doctor prescribes the medication but someone else assists the patient on administering the medication
- AKA: Physician Assisted Death, Medical Assistance in Dying (MAID; this is the current legal term).
- MAID is defined by the CPSO: "Medical Assistance in Dying: In accordance with federal legislation, medical assistance in dying includes circumstances where a medical practitioner or nurse practitioner, at an individual’s request: (a) administers a substance that causes an individual’s death; or (b) prescribes a substance for an individual to self-administer to cause their own death."
In February 2015, the Supreme Court of Canada struck down the constitutional ban on physician-assisted suicide. As of July 2016, firm guidelines are still being made.
Eligibility criteria for Medical Assistance in Dying – all of the following:
- Adult 18+, mentally competent or capable to make health care decisions for themselves
- Grievous and irremediable medical condition
- Serious and incurable illness, disease or disability
- “In an advanced state of irreversible decline in capability”
- Physical and/or psychological distress, intolerable, unrelievable
- Natural death is reasonably foreseeable
- Voluntary request for medical assistance in dying which does not result from external pressure;
- Giving informed consent to receive MAID; and
- Eligible for health services in Canada.
- The request for MAID must be made in writing by the patient or another adult on the patient’s behalf, if the patient cannot write. This must be witnessed by 2 independent witnesses.
- A physician or nurse practitioner must give their opinion that the patient is eligible to receive medical assistance in dying and a second physician/nurse practitioner must also their provide a written opinion confirming the patient is eligible to receive MAID
- The patient has a mandatory reflection period of at least 15 days between the day the written request was signed and the day medical assistance in dying is to be provided, unless death or the patient's loss of capacity are imminent;
- A patient requesting medical assistance in dying can rescind their request at any time; and
- Immediately before providing medical assistance in dying, the physician or nurse practitioner must give the patient the opportunity to withdraw their request and ensure that the patient gives express consent to receive medical assistance in dying.
Palliative sedation: use of sedative medications to relieve intolerable suffering from symptoms by a reduction in patient consciousness; the primary goal of the treatment is patient sedation to relieve suffering and improve quality of life.
There is no evidence that palliative sedation shortens life (when used appropriately); it is the actual disease process that kills the patient.
The primary reason for palliative sedation in Canada is intractable delirium. Other common reasons include dyspnea, pain, psychological distress, vomiting, hemorrhaging, etc.
Sometimes, patients, families and health practitioners think that the withdrawal of treatment is equivalent to euthanasia. While this subject is still discussed from a philosophical perspective, the current legal perspective is that the following treatment approaches are not equivalent to euthanasia:
- Stopping or not starting a treatment that is deemed medically useless or futile
- Stopping or not starting a treatment at the patient's request.
Other actions that are legally not classified as euthanasia but may still result in a patient’s death:
- Speeding up death unintentionally as a side effect of a treatment
- Appropriately titrating opioids to achieve pain relief.
Approximately 20% of all Canadian health care expenditures are for individuals in their last year of life.
Most deaths are due to chronic, disabling conditions that require long term care, so population aging has important implications for health care planning and policy development. The growing numbers with age-related conditions such as arthritis or dementia also implies more demands on health and community services.
Canada has seen little research on end-of-life issues and needs for care of the elderly. Dying people are among the most needy in our society in terms of care and relief of suffering, and they are often vulnerable in being too sick to express their needs effectively. They are subject to changes in health care provision and there are several indicators that Canada may not be doing as well as we might wish:
- Current Location for Dying: While most Canadians currently die in hospital, this is not their preference.
- Lack of government attention: The 1995 Special Senate Committee on Euthanasia and Assisted Suicide recommended that the government make palliative care a priority in restructuring the health system (Senate of Canada. Of life and death: report of the special senate committee on euthanasia and assisted suicide. Neiman JB, editor. YC2-351/1-01E. 1995. Ottawa, Ontario, Senate of Canada). From 2001 to 2006, the Canadian federal government funded the Secretariat on Palliative End-of-Life Care – however, it was disbanded in 2007 and no further work on a national palliative and end of-life-care strategy has been completed.
- Disparity of access: Access to palliative care varies across Canada and some authors report a palliative care crisis (Chochinov HM, Kristjanson LJ. Dying to pay: The cost of end-of-life care. Journal of Palliative Care 1998; 14:5-15). According to the Canadian Hospice Palliative Care Association, only 16-30% of Canadians who die have access to hospice palliative and end-of-life care services
- Focus: The provision of palliative care has been criticized as being rooted too much in cancer (and more recently in AIDS) care. Patients with other terminal illnesses may require a different approach to that used for cancer or AIDS.
- Transitions: Transitions from community, to institutional, to hospital and to palliative care are often not smooth.
This was developed at the Royal Liverpool Hospital in England in 2001 to ensure quality of end-of-life care. The pathway is implemented when "all possible reversible causes" of a patient's condition have been considered, and a multi-professional team has agreed that the patient is dying, and that at least 2 of the following criteria are met: the patient is bedbound; only able to take sips of fluids; is semi-comatose; or no longer able to take tablets. The overall goal was to formally transition from carrying on treatment to a controlled management plan for the terminal stages of illness.
The Pathway has, however, been criticised as predicting death is an inexact science, and fears arose that patients, once on the pathway, would be left to die.
The September 2009 version opens with a flow chart that establishes a consensus among multidisciplinary team members that the patient is dying. At any step in the pathway, an unexpected improvement in the patient's condition triggers an overall re-assessment of the diagnosis. This was implemented in response to criticisms that the Pathway represented a pre-determined assumption that the patient is dying.
The pathway sets out 14 goals for care. Each is checked off and monitored subsequently, and variances are documented. Here is a slightly abbreviated version:
- The patient is able to take a full and active part in communication.
- The patient (and caregiver) is aware of their diagnosis; the patient is aware that they are dying.
- The health care team has up to date information with regards to contacting the relatives in the event of the patient's deterioration.
- The patient (and carer) is given the opportunity to discuss their wishes, feelings, faith, meaning, beliefs, values.
- The relative / carer has a full explanation of the facilities available to them.
- The primary health care team is aware that the patient is dying.
- The patient is only receiving medication that the multi-professional team agrees is beneficial at this time.
- The patient has medical prescribed on a prn basis for the following 5 symptoms which may develop in the last hours or days of life: Pain; Agitation; Respiratory tract secretions; Nausea & vomiting; Dyspnoea.
- The patient has equipment to support a continuous subcutaneous infusion of medication.
- The patient is only receiving interventions that the multi-professional team agree are in the patient's best interest; there is a Do Not Attempt Cardiopulmonary Resuscitation Order in place.
- The patient has had an assessment regarding the use of clinically assisted (artificial) nutrition.
- The patient has had an assessment regarding the use of clinically assisted (artificial) hydration.
- The patient has had a review of their skin integrity status.
- The patient (and carer) has received a full explanation of the current plan of care.
Links: CMAJ review of the 2009 audit of the Pathway in 155 British hospitals.
Click here (link) to read “Fact sheet: Hospice Palliative Care in Canada” by the Canadian Hospice Palliative Care Association.
Why are we so unwilling to talk about dying? TED talk by Dr. Peter Saul
Link to U Toronto program on end of life care -- module on how culture influences our thinking about dying
A patient’s culture, faith and personal beliefs and attitudes towards death and dying can have a significant impact on their mental wellbeing and their health care decision making in palliative and end-of-life care. Holistic palliative and end-of-life care should take into these into account. Here are some approaches:
FICA (spiritual and social history)
FICA: a method of taking a spiritual history. This is not necessarily a religious history, but whatever the patient connects to on a spiritual level.
F--Faith and Belief
"Do you consider yourself spiritual or religious?" or "Do you have spiritual beliefs that help you cope with stress?" If the patient responds "No," the physician might ask, "What gives your life meaning?" Sometimes patients respond with answers such as family, career, or nature.
"What importance does your faith or belief have in our life? Have your beliefs influenced how you take care of yourself in this illness? What role do your beliefs play in regaining your health?"
"Are you part of a spiritual or religious community? Is this of support to you and how? Is there a group of people you really love or who are important to you?" Communities such as churches, temples, and mosques, or a group of like-minded friends can serve as strong support systems for some patients.
A--Address in Care
"How would you like me, your healthcare provider, to address these issues in your healthcare?“ “Is there something that would be important for you at this time?”
Culture encompasses more than just a person’s ethnicity but also refers to learned behaviours, beliefs, and values that frame their perceptions and experiences.
It is important to ask the patient and family about specific beliefs, practices, and customs that may be relevant and important during medical treatment, hospitalization and in preparation for death.
An individual’s culture may involve rituals surrounding death and grief, family roles during dying, and culture may impact truth telling, values regarding pain management, expectations of health care, etc.
It is important to recognize that you (the health care practitioner) also have your own culture that guides your approach to death and dying. Be professional and open to cross-cultural communication; your approach is not the only or necessarily the best approach.
A Note: Some families may ask you not to tell their family member (your patient) the true nature of their illness or that they are dying. If a family does not want to be informed, explore the reasons why. Some may fear distressing the patient. Some may simply be unable to face the fact of losing their loved one. Others may have cultural beliefs surrounding death in which the patient is not informed. Respect for the family must be balanced with your role as a health provider: you have an ethical and legal obligation to give your patient as much information as they desire regarding their illness and care.
When talking with the family, explain that you have an ethical obligation to at least check with the patient about what he or she wants to know. Information will not be forced on the patient but must be offered. Most patients already know when they have a serious illness and withholding information can cause them distress. You may or may not want to invite family members to be present when you talk to the patient.
Discussing prognosis helps to maintain the patient's autonomy – but is also important because it allows for transition from curative to palliative care and allows the family time to plan ahead (advance directives, will, finances, POA, end of life preferences, etc). Individuals who had discussions with their doctors regarding prognosis are found to have less distress, more frequent and earlier involvement in palliative care services and better management of EOL care.
Finally, if there is a language barrier, it is best to use the services of a professional interpreter rather than a family member.
Advance Directives: Legal documents signed by the patient that outline their preferences concerning medical treatment if they are unable to communicate these preferences themselves. "A directive is a legal document through which a capable person gives another individual the authority in advance to make decisions on his or her behalf while alive. Typically, it allows the authorized individual to make health care decisions when the patient becomes incapable. And, it usually includes instructions that the appointee must follow when making these decisions.” (CMPA)
Directives communicate wishes i advance to family, friends and the medical team in order to avoid confusion later. This is especially important in end-of-life cases when the patient is no longer aware or competent to make medical decisions; advance directives help the substitute decision maker who holds power of attorney (see below) to make choices that suit the patient’s best interests.
Directives do not have to follow a specific format, but they do need to be signed, witnessed, and dated. The patient must have competence at the time that the document is prepared and signed. Methods of assessing competence vary across provinces.
Ask your patient if they have a health care directive and keep a copy in the medical record. When a patient’s incapacity has been properly assessed, the person nominated in the directive is the first person the physician should approach to consent on behalf of the patient. If there is no directive, provincial legislation sets out a hierarchy of persons to approach for consent.
Substitute Decision Maker: A preson appoiunted to make health care decisions on behalf of an individual who is unable to communicate or is incapable of making decisions.
A Substitute Decision Maker is legally appointed according to the following hierarchy:
- If Power of Attorney has been granted (see below): Appointed by the individual
- Without POA – Hierarchy of SDMs:
- Patient’s spouse, common-law spouse or partner
- Patient’s child (aged ≥16 y.o.) or parent
- Patient’s parent; custodial parent ranks ahead of non-custodial parent
- Patient’s brother or sister
- Any other relative by blood, marriage or adoption
- The Office of the Public Guardian and Trustee.
The provincial Public Guardian and Trustee is the substitute decision-maker of last resort if there is no other appropriate person to act.
The Office of the Public Guardian and Trustees lists three kinds of Power of Attorney:
Living Will: A type of advance directive that focuses specifically on decisions regarding treatment (most often end-of-life treatment) if the patient is unable to communicate their own wishes. The terms “living will” and “advance directives” are sometimes used interchangeably.
A Guide to Consent and Capacity in Ontario
Inevitably you will become involved in supporting grieving patients following an event such as a family death, marriage failure, job loss, or a diagnosis. It is helpful to understand the natural history of mourning and the grieving process, so that you can reassure people whose grief is taking a natural course, and also recognise when a grief reaction becomes abnormal.
The Function of Grieving
Humans are social animals and must find a way to sever emotional ties to a loved person who has died before they can be free to begin new activities and form new relationships. Mourning serves this freeing, readjustment and adaptation function. Similarly, when a person loses their job, they must readjust their self-image and work out a rational way to comprehend what has happened.
Stages of Grieving
Many authors have described the typical stages of grieving. But beware: there is wide variation in mourning styles between people and between cultures. The degree of mourning will depend on the nature of the lost relationship, its duration and intensity, and on how much ambivalence there may have been towards the person who has been lost. Mourning will also vary according to the circumstances of the loss: the sudden and unexpected death of a child may provoke more profound grief than long-awaited passing of a grandparent. Be aware that people may not complete the process of mourning and so may not free themselves from their emotional attachment.
The following is a generic description of the stages of grief and resolution of bereavement. It is based on the work of several authors, including John Bowlby's stages:
Stage 1: Shock, numbness and protest. The person has yet to adjust and so feels shock, distress, fear, perhaps anger at the loss. The protest may take forms of denial such as "No: this cannot have not happened to me. I can't believe it. It is all a bad dream." In the clinic, a patient may react saying "Those cannot be my test results!"
This phase may last hours, or it may last much longer. Weeping is common; this may form both a protest at the loss and an attempt to recover what has been lost: weeping draws attention to one's loss and pleads for assistance. The bereaved person may need to talk about the death, even though relatives may prefer to avoid talking about it.
Be aware that a person is this initial stage of grief may feel anger and hostility, sometimes directed towards you, the physician: "You didn't save him; you could have done more." Sometimes it is directed at themselves: "I should have been there; I could have helped." At other times it may be directed towards the dead person: "Why did you leave me? I need you."
The anger that can accompany this first stage is difficult to deal with in a rushed clinic. It is a secondary emotion, resulting from pain or fear. An empathic comment ("That must be tough") may help diffuse the pain and so reduce the anger somewhat.
Be aware, also, that well-intentioned actions such as removing a body soon after death may impede a family's ability to adjust to the loss by looking one last time at their relative. One function of funerals is to provide a formal recognition that a death has occurred. They communicate this fact to everyone, saving the family the difficulty of informing people themselves. Viewing a body in a casket may help move the process of mourning forward. The doctor's may play an important role in providing the family with factual information on what happened and why, to help them face the reality of the death.
Stage 2: Yearning. In Bowlby's model the stage of initial shock leads to a phase of yearning and searching for the lost person. The grieving person becomes preoccupied with the lost person; the world seems empty and meaningless without them. The bereaved may think about the lost person for hours, reliving memories even though this is painful. The predominant emotion is of painful sadness. This appears to be a process of transferring feelings of attachment for the person onto memories of the person; as each memory is relived, the person gradually assembles the internal realization that the relationship has ended. There may be returns to denial during this process.
In other models this stage is merged with the stage of disorganization:
Stage 3: Disorganization and despair. Through this process of mental reliving the lost person, the bereaved person comes to accept the permanent loss and experiences restlessness and aimlessness; perhaps becoming withdrawn, introverted and irritable. Like anger, depression pushes other people away. Relationships lose warmth and spontaneity; the person may feel guilty and angry about their feelings. The world seems bleak and empty, but this differs from clinical depression in that the person's self-esteem is still intact.
Somatic symptoms may include digestive disturbances, loss of appetite, choking sensations, lack of energy and physical exhaustion. Most people at this stage try to avoid being reminded of the lost person. Some become restless and need to pace about
Stage 4. Reorganization. Here the grief begins to recede and the person begins to establish new patterns and goals in their life, a process that may take months or even years. Painful memories begin to fade and hurt is replaced by cherished memories, pleasure and affection. New activities and relationships are begun, although survivor guilt may be evoked if a new love object enters the person's life.
When the process evolves successfully, the person may mature and grow from the experience of bereavement. A widow may become more independent, feel better able to take care of herself, and may undertake projects she never could while her husband was alive.
Medical Impact & Depression
The risk of medical illness in widows and widowers rises during the year following bereavement and commonly there is an increase in medical consultations following bereavement. Psychosomatic conditions such as ulcers, rheumatoid arthritis, or asthma are common.
Persistent depression represents an abnormal reaction to bereavement; it may be linked to guilt and self-criticism following the death. It can also be linked to hostile feelings toward the deceased person that are not acceptable and so cannot be expressed, so are turned inwards.
Complicated grief: Grief that is complicated by other issues, that doesn’t follow the “usual” pattern. This may be difficult to assess, as grief is personal and there isn’t an absolute formula for grief. Complicated grief may include:
- Excessive guilt and self reproach
- Extreme anniversary reactions
- Unwillingness to part with deceased’s belongings
- A feeling that death was recent even though it was remote
- Elements of PTSD
- Self destructive elements.
Samuel Golubchuk died on June 24, 2008 at age 84. He had been on life support for seven and a half months.
Following a fall in June of 2003, Mr. Golubchuk suffered a brain injury but could still communicate. He was in a nursing home. He was admitted to the ICU of a Winnipeg hospital in November, 2007 with pneumonia and placed on a respirator with an NG tube. After about a week, doctors concluded that he had minimal brain function, that his chances of recovery were nil and proposed to the family that he be allowed to die naturally. The family refused, on religious grounds, arguing that removal of life support would constitute assault and murder. They held that euthanasia is unacceptable to their orthodox Jewish beliefs.The doctors pressed them to consent to removing the life support, and the family decided to take them to court.
In February 2008, a judge sided with the family and placed an injunction preventing doctors from withdrawing care until a full trial could be heard, likely in September, 2008. During April and May, the doctors became increasingly concerned over the development of infected ulcers which required surgical excision. As Mr. Golubchuk was not in a fully vegetative state, he could feel pain and discomfort. The doctors argued that this surgery was potentially painful and that it would confer no ultimate benefit. The disagreement with the family persisted and the case gained international attention in the press.
One doctor resigned rather than obey the court order, considering the treatment an assault and "tantamount to torture." Two other ICU doctors announced that they could no longer ethically justify treating Mr. Golubchuk; one noting his distress at having to choose between legal consequences including the threat of imprisonment and his duty not to inflict further harm to his patient.
The refusal of the three physicians to provide further care for the patient raised a critical staffing issue in the ICU. The hospital attempted to get the courts to expedite the case, while the family’s lawyer argued that the hospital agreed that the patient was not brain dead, and that they failed to provide sufficient evidence that his condition was irreversible. A family member stated
"Sam is not in a 'vegetative' state, nor is he suffering from a terminal illness of any kind. He is not suffering and is in no pain whatsoever. The hospital seems to want to end his life because he's old, he's weak and he's disabled and it doesn't want to spend money on his care - although it doesn't mind using taxpayers' money to fund its legal crusade! This is not just about Sam's life. We're also fighting for ourselves, our children and everyone we care about; we're fighting for the kind of society we want to live in and leave to future generations. If bureaucrats can refuse to care for our father because he's too old and disabled, then they can refuse to care for anyone they deem unworthy."
Following Mr. Golubchuk's death, the family lawyer commented "Mr. Golubchuk won, he didn't die because they pulled him off life support. He died when his time had come."
When doctors and a family disagree, who should have the final say in end-of-life care? The doctors? The family? Or should it be left to a protracted court decision?
Be prepared to talk to a person who is grieving. You may feel uncomfortable about raising the subject, especially if you were caring for the deceased person. But an empathetic talk can greatly help the process of grieving; pointing out the normal feelings that a grieving person goes through may be helpful: they are not "going mad". We do not commonly experience such deep feelings, so it is reasonable that a patient may question his or her sanity. Reassure them that feelings of guilt or anger are normal, and understandable. For example, simply listening as a grieving person expresses their anger towards their spouse for leaving them may help them come to terms with these feelings, help them acknowledge the existence of the feelings without judgment and self-recrimination.
If the family members want to know about the disease that caused a relative's death, tell them. This will help them make sense of the death. The physician's support can greatly assist the phase of reorganization; you can support them in beginning to form new relationships ("No, I am sure he would approve!").
When a person is adjusting to a new diagnosis you should recognize that they will go through phases of denial, anger, questioning and perhaps despair. Recognize that they will not be able to absorb the information that you give them when they are in the denial stage. Try to identify which grieving stage they are in, and respond to that.
Work Loss and Grief
People who lose their job go through many of the above grief stages. Clinically, you may expect a laid-off worker to present with feelings of shock, numbness and disbelief. In this stage they are not ready to make plans for finding a new job. This may be followed by denial: "This can't be happening to me: it must be a mistake". Anger is a common emotion following job loss: it must be someone's fault. They may feel embarrassed at being perceived as a failure, and yet they are powerless to do anything. Some will argue about the job loss, hoping that by bargaining with the employer they may be able to get their job back. Others may become depressed and feel helpless and hopeless. Fear and anxiety over practical matters such as paying bills is common. Acceptance comes when they realize they could do little about an economic recession; there are many others in the same situation and it should not shake their self-esteem. As resentment subsides, the worker can start to plan what to do next.
(Adapted from J. Newman & D. Grigg: Canwest news service, March 25, 2009)
A site intended for patients that describes grief reactions
"Conversations with Siobhan". Siobhan Rock is a patient with ALS who came to present to the class in February 2013; she was a teacher and has put several video logs on YouTube to document her progress and adjustment to the disease.
Updated November 21, 2018