Legacy of Life

Organ and tissue donation are a vital part of high-quality end of life care and all healthcare professionals have an integral role in this process.

Overview

Organ donation is a gift that provides tremendous life-saving opportunities for thousands of Canadians each year. In the past 10 years Canada has been successful at increasing organ donation rates by approximately 40%, however the supply of organs still falls far short of the need and the transplant waiting list grows longer every year. Compared to other leading countries, Canada still has room for improvement.

One organ donor can be life-changing for up to 8 recipients. Transplantation is the only option in end-stage heart, lung and liver disease and increases an individual’s life expectancy when compared to dialysis in the setting of end-stage kidney disease. One tissue donor can help more than 75 people; not only are tissue transplants life-enhancing, they can also be lifesaving (e.g. heart valves, skin). Through organ and tissue donation, one donor can extend and improve the quality of life of many.

The benefits of donation also extend to donor families by providing comfort and support to families in their time of grief and in the years to come, knowing something positive came from tragedy. Finally, there are substantial economic benefits to society as patients with end-stage organ disease, like those who are suffering from kidney failure who will no longer need dialysis, can often return to work.

There is a much higher chance that someone will acquire an illness that will require a transplant than there is that they would become a donor. A successful organ donation program increases the chance that an organ is available when needed.  Nova Scotians need your help to ensure no potential donation opportunity is missed.

Identification and Referral of Potential Donors

Early Consultation and Mandatory Referral

  • Donation expertise and support are available 24/7 to all hospitals in Nova Scotia.
  • Early consultation with the Organ Donation Coordinators is recommended for patients who are transitioning to palliation.
  • Referral is mandatory for all patients who meet the clinical criteria (see GIVE below).
  • Medical eligibility for donation is to be determined by the Organ Donation Program.

In Canada, deceased organ donation can occur in two ways, following:

Any patient who meets clinical triggers (GIVE) should be referred to Nova Scotia’s Organ Donation Organization, Legacy of Life, for consideration for donation.

Contact the Organ Donation Coordinator at 902-473-2222 when GIVE criteria are met.

G


Grave prognosis in which the opinion of a physician is that death is imminent

I


Injured brain or non-recoverable injury or illness

V


Ventilated: invasive (intubated/tracheotomy) or non-invasive (bi-level positive airway pressure/continuous positive airway pressure ventilation) and/or circulatory support (VADS and/or inotrope support) - where either are required to sustain life

E


End of Life/Withdrawal of Life Sustaining Therapy discussion is being planned

NOTE Do not initiate conversations related to donation with the family until an organ donation coordinator has been contacted.

If the SDM/family have indicated they do not support donation prior to contacting the program, continue with the referral.

In an effort to minimize missed potential donors, clinical triggers are purposefully broad, knowing that some patients who meet these criteria may not end up being medically suitable for a safe organ transplant.

An assessment by the Legacy of Life program, in consultation with the Transplant program, ultimately determines medical suitability and the safety of organs for transplantation.  

Patients who have been approved for medical assistance in dying (MAiD) should also be referred to Legacy of Life for consideration of donation; this consult should occur well in advance of the planned MAiD procedure date whenever possible.

  • To make a referral please call: 473-2222 and ask for the organ donation coordinator on call.

Nova Scotia’s Human Organ and Tissue Donation Act mandates health care providers to refer any patient who meets these clinical triggers.  If you have a patient who meets these criteria please call the QEII hospital location at (902) 473-2222 and ask for the organ donation coordinator on call, BEFORE initiating any conversations with the potential donor or their family. This allows the organ donor coordinator time to perform an initial screen to ensure families are not offered an opportunity when the potential donor is not medically suitable for a safe organ transplant. They can also provide some guidance and suggestions about how best to discuss donation with the patient and/or their family.

Given the ever-evolving changes in medical suitability we ask that you do not screen for exclusionary criteria.  Please leave that to Legacy of Life’s donation team.

Neurological Determination of Death

Neurological determination of death is defined as the irreversible loss of the capacity for consciousness combined with the irreversible loss of all brainstem functions, including the capacity to breathe.  Declaration of neurological death is an advanced skill and should only be performed by physicians who have knowledge and experience in completing the assessment. 

In order to confirm neurological death, there must be a compatible mechanism of injury, an absence of any confounding factors and completion of the entire clinical assessment.  If any of these steps are not able to be completed the patient will need to proceed to ancillary testing to support the clinical diagnosis. The clinical diagnosis of neurological death takes primacy over the use of ancillary testing and is considered the Gold Standard. 

The clinical examination for neurological death must be completed by two physicians who have licenses to practice medicine independently in the province of Nova Scotia. The examination occurs at the bedside and is an assessment of brainstem function.  It is composed of motor response to pain, assessment of brainstem reflexes and the absence of respiration on apnea testing. 

Donation after Circulatory Death

Donation after circulatory death (DCD) provides an opportunity for organ donation to patients with non-recoverable illnesses who are receiving life sustaining measures.

Any patient on life support due to any illness, and in whom a decision to discontinue life-sustaining measures (comfort care) has been made, should be referred to Legacy of Life’s organ donation coordinators for consideration of organ donation. This referral must be placed as soon as the decision has been made to switch to comfort care, prior to initiation of withdrawal of life sustaining measures. 

Patients who will become DCD organ donors require a series of organ specific tests to confirm the safety of their organs for transplantation. The timing of the referral and consultation with Legacy of Life’s team is the first step in ensuring we can honour the patients' decisions to donate. The Legacy of Life team will work with health care professionals to ensure that the timing of withdrawal of life-sustaining treatment occurs in a structured fashion.

The time period between the withdrawal of life-sustaining measures and cessation of cardiac output is characterized by hypotension and hypoxia and is referred to as the warm ischemic time. The impact of the warm ischemic time on an organ’s viability varies greatly depending on the organ.  Donation is possible if the patient dies within a time window that allows for recovery of medically suitable organs for transplantation. Some patients will not die in a time interval that would allow for successful transplantation so planning with the health care teams (ICU, OR) and families must anticipate this possibility; this is where the Legacy of Life team is crucial in working with local healthcare teams.   

It is very important to recognize and respect that a patient who is a potential DCD donor is still alive during their organ donation work-up.  This is in contrast to a NDD donor who has been declared dead prior to the start of donation investigations.  It is vital to limit any pre-mortem investigations that are not necessary for the donation and transplantation of safe and healthy organs.

With very few exceptions, it is also essential to ensure that your hospital policies for end-of-life care are followed regardless of the patient’s donation status.  Routine administration of medications for comfort care, including sedation and analgesia, should not be altered for DCD patients.  In some situations, the location in which the withdrawal of life-sustaining measures takes place may need to be altered.  This possibility, along with what to expect during the DCD process should be clearly communicated to the family and support provided to them throughout the process.

Finally, it’s important to recognize that a DCD that does not proceed to organ recovery can be very difficult for both the family and the healthcare team.  Families often describe this experience as a second loss with respect to their loved one, however they are very grateful that we honoured their loved one’s consent for organ donation. Tissue donation, when a patient is medically eligible, may still proceed even when organ recovery cannot. Supports should be available for all involved.

Organ Donation Following a MAiD Procedure

Organ donation following MAiD should be offered to all patients who meet preliminary medical suitability for donation.  Patients who are interested in organ donation following MAiD are competent to provide first-person consent and their autonomy when making end-of-life care choices should be respected.

Donation will impact a patient’s final days as well as their MAiD procedure. In order to ensure the safety of the transplanted organs several tests will need to be conducted prior to the procedure.  When possible, these investigations will be conducted in the patient’s home, however, some testing may require a visit to the hospital (e.g. CXR or abdominal ultrasound).  Recognizing that this may be a significant challenge for some patients, as they may be much debilitated at this point in their illness, the Legacy of Life donation team will work with health providers within the patient’s circle of care, to ensure these investigations are conducted as efficiently as possible and in accordance with the patient’s wishes. 

Donation may also impact the patient’s choice of setting for the MAiD procedure.  In order to donate organs after MAiD, the MAiD procedure must take place in a  hospital setting. We will work with patients and their families to try and accommodate any celebrations or special ceremonies which may be important to the patient at end of life, prior to their MAiD procedure.

Any patient or member of the patient’s circle of care can call Legacy of Life’s organ donation coordinator through the QEII hospital locating at (902) 473-2220 for more information about donation following MAiD. Only general information about the process will be provided prior to the patient being approved for MAiD. Once MAiD has been approved by two assessors a formal referral should be made to the donation coordinator and specific information can be reviewed and shared.

Her Last Project

On August 31, 2018 Dr. Shelly Sarwal became the first person in Nova Scotia to donate her organs following Medical Assistance in Dying (MAiD). Dr. Sarwal was an extraordinary woman who opened her life to strangers during her final days such that others may learn from her experience. Her Last Project is the story of Shelly's journey and has invaluable lessons for all of us about what matters most at the end of life.

The Donation Opportunity

Many families have never discussed end-of-life care wishes, including organ and tissue donation. With the new legislation, conversations about end-of-life care are strongly recommended as deemed consent means organ and tissue donation will proceed in medically appropriate donors unless the patient objected, as communicated to their family or through the opt-out registry

Ideally, donation conversations, similar to end-of-life care discussions, are introduced by a patient’s primary care provider and shared with family and friends long before a moment of crisis.  Although public awareness and discussions are increasing, families may be unaware of their loved ones decisions about organ and tissue donation.

The acuity and intensity of situations necessitating donation conversations make these discussions with patients and families an advanced skill.  They should be led by a member of the health care team who has expertise in both organ donation and conducting crucial conversations.  It should be an individual who is compassionate, empathetic and holds positive views about the donation opportunity.

Organ donation is a rare event, and most front-line health care professionals have never participated in the care of a potential donor. In addition, in Nova Scotia all potential organ donors are transferred to Halifax for assessment. It is imperative that in these circumstances families understand that transfer of their loved one is to facilitate assessment for donation, not for further treatment considerations. This means health care professionals unfamiliar with donation may be the frontline workers responsible for the initial donation conversations with family.  

If you find yourself in this situation, we ask that you pause and call the organ donation coordinator prior to speaking with the family.  This initial conversation will allow:

  1. A preliminary pre-screening to ensure there are no obvious contraindications to donation and prevent offering an option to a family that never really existed.
  2. The donation coordinator to check if the patient had registered a decision about organ donation.
  3. A conversation with a donation expert to explore the best approach to sensitively discuss donation with the family.

Tips for Discussion Donation with a Potential Donor Family

If you find yourself in the situation where you will be leading the donation conversation with a family member, in addition to first calling the organ donation coordinator, please consider the following:

  1. Choose a private location for meeting with the family.
  2. Ensure a support person, as well as resources such as social work and spiritual care, are available for the family.
  3. Ensure conversations about death (in the case of NDD) or end of life care (in the case of DCD) have been held and the information accepted by the family prior to any discussions about organ donation. In particular, the family needs to understand that neurological death is final, irreversible, in spite of the appearance of their loved one who, to them, appears to be deeply sleeping. Sometimes reviewing imaging helps families understand the magnitude of the brain injury.
  4. Hold a meeting with the healthcare team prior to meeting with the family to understand any dynamics or situations that may require additional support.
  5. Be mindful of medical language; speak in a clear and simple manner. 
  6. Be sure to address questions and any misconceptions.
  7. Don’t rush the family.  Give them time to think and process the information you’ve provided. A follow up meeting may be needed to allow families to process the information provided.
  8. A discussion of the donation process, including health status screening and timelines, is necessary so expectations are managed proactively.
  9. The donor coordinator may be able to participate in these meetings in person or via video conference with adequate advance notice.

Medical Management of the Potential Organ Donor and Family Support During the Donation Process

Once a potential donor has been identified it is vital to maintain the donation opportunity until further organ specific suitability testing for donation can be completed.  Most often this will involve transfer of the patient to the Halifax Intensive Care Unit for assessment, which will be coordinated by the organ donation coordinator.

Prior to and during transfer it is important to continue to support the patient, targeting normal physiological parameters.  This would include:

  1. Treating any pain or agitation with sedation and analgesia guided by validated scoring systems such as CCPOT and RASS.
  2. Ventilation adjustments that aim to achieve tidal volumes of 6-8 ml/kg, peep >/= 8, O2 sats > 92% and normal pH.
  3. Hemodynamic support targeting MAP >/= 65.
  4. Awareness of the potential for development of diabetes insipidus and management with Vasopressin or DDAVP as needed.
  5. Appropriate broad spectrum antibiotics in cases of suspected infection.

Further management specific to the potential donor can be initiated as necessary upon arrival to Halifax.

It is also important to attend to the psychological, spiritual and social needs of the family during this difficult time.  This could include things like:

  1. The establishment of a private room dedicated to the patient’s family.
  2. Allowing family time to be with their loved one as soon as medically possible.
  3. Ensuring a member of the healthcare team is assigned as a support to the family – this may be someone from the bedside team, social work or spiritual care.
  4. Frequent, clear communication about the condition of their loved one as well as information about any tests or procedures completed.