Journeys at end of life: A palliative care physician’s experience
News & Updates | October 21, 2022 | Dr. Jyothi Jayaraman
Dr. Jyothi Jayaraman is a palliative care provider in Vancouver, B.C. In addition to participating in DWDC’s Palliative Care 101 webinar, Dr. Jayaraman offers further insight into the practice of palliative care and specific examples of what it can look like with different patients.
Palliative care is whole person care. It means that we not only try to address the physical concerns but also the spiritual and psychological concerns of the patient and the family or loved ones. Palliative care is restricted to those who have been diagnosed with a life-limiting, life-threatening or life-ending illness. Introduction to palliative care may occur at different stages of illness – not just at the end of life – and across a variety of settings including home, outpatient clinics, hospital, residential care and hospices.
In the definition of palliative care set by the WHO, the language suggests that palliative care intends neither to hasten or postpone death, and therefore it’s important to note that not all palliative care clinicians include medical assistance in dying (MAID) as part of the practice. This is changing but it is worth knowing if you or someone you support begins palliative care.
A palliative care physician works with the palliative care team to support a patient and their family to navigate the unfamiliar terrain of living with life-altering illness. A palliative care team typically includes a nurse, palliative care physician, a social worker, occupational therapist, physical therapist, dietician and spiritual care worker; music therapists may also be part of the team. Palliative care is patient and family centered in order to address the needs of everyone in the patient’s immediate circle.
As a palliative care physician, I have provided care for many patients with different needs and wishes. No two patients are alike, but there are some recurring patient circumstances that I can share to help illustrate palliative care.
Someone at the end of life
Sarah was an 84-year-old woman who had surgery for mitral valve disease a few years ago. She did very well but has begun to have symptoms of heart failure more recently. After her most recent hospital admission for heart failure, a referral was made to the community palliative care team by her family physician.
At this stage, some of the issues addressed by the palliative care team were:
- Her goals of care
- A discussion with Sarah to understand what her wishes are for levels of intervention for future care including CPR or ICU
- Optimization of medication management of her symptoms including shortness of breath, fatigue, depression
- Location support – does she want to die at home, and what would that look like?
- To learn if Sarah is spiritual and if she would like spiritual counselling
- Helping her understand and prepare for what may lie ahead
The palliative care team was able to provide Sarah with information and options so she could plan her care and transition at end of life that best reflected her wishes and values.
Someone not near their end of life
Rajiv is a 70-year-old man who was diagnosed with prostate cancer 10 years ago. He responded well to initial treatment and was doing well until three months ago when he developed pain in his left hip area. He was found to have widespread bony metastasis with the largest deposit in his left sacrum. He received radiation for the sacrum which resulted in some benefit. He was started on further anti-cancer treatment and his PSA levels came down. However, he continued to have pain in his spine where he had a L1 compression fracture (related to a metastatic deposit). The oncologist referred him to the pain and symptom management clinic associated with the cancer agency. He was seen by the palliative care physician who decided to consult with the intervention pain specialist. It was determined that Rajiv was an excellent candidate for minimally invasive (percutaneous) cementoplasty of the L1 vertebra. Rajiv was admitted in the palliative care unit to undergo the procedure. He was discharged back home after the cementoplasty and has returned to living an active life. He will continue to be followed as an outpatient by the oncologist and the pain and symptom management clinic.
Someone who was transferred to hospice
80-year-old Steven was diagnosed with idiopathic pulmonary fibrosis in 2017. As the condition progressed, he continued to make the best use of his energy, especially spending a lot of time in his garden. He was well supported by his 80-year-old wife. The couple had no children and their friends and family lived quite far away from them. One month ago, Steven started to feel very short of breath and his respirologist felt that it was the right time to make a referral to the palliative care team in the community. He was visited by the palliative care nurse who completed a comprehensive assessment. She asked the social worker to help the couple get their finances in order and the occupational therapist to improve the safety and comfort of their home. Steven was very clear that he wanted to die at home, looking out at his beloved garden and his wife wished to support him. The palliative care physician started Steven on low doses of opioids for his breathlessness. Unfortunately, in spite of extensive support from the community, Steven’s care needs grew beyond the capability of his wife. Steven’s breathlessness made him anxious and confused and he needed 24-hour expert care. The nurse helped them to identify a convenient hospice and Steven was transferred there. His window looked out onto the beautiful hospice garden. On his better days he was wheeled out to sit in that garden. He died peacefully two weeks after his admission. His wife was able to stay the night with him towards the end.
Someone who chose to die at home
Sunitha was 74 years old and living with widely metastatic breast cancer. When she developed brain metastasis she made a request for medical assistance in dying (MAID). At the same time her oncologist made a referral to the Home Hospice Team. Sunitha had a very close relationship with her family physician. She was well supported by her spouse, and she had 3 adult children (with their families) living in the same city who were also very involved in her life. Sunitha was found eligible for MAID. She completed a Waiver of Final Consent. She was very certain that she would only want MAID if she could no longer remain at home.
In the next few weeks, Sunitha had some difficulty with controlling her pain. Her family doctor made a house call and was able to manage her pain with help from the hospice physician. The hospice team occupational therapist helped make the home safe. The nurse gave them information to rent a hospital bed, bedside commode and wheelchair from the Red Cross. Sunitha became bed bound and started to have longer periods of decreased level of consciousness. As her swallowing became difficult, her medications were switched to the subcutaneous route. The community nurse taught the family how to administer the medications and made daily visits to draw up the syringes and to monitor Sunitha’s condition. The family doctor was available by phone and continued to make house calls as needed. As death drew near, the hospice nurse offered shift care nursing for 72 hours to support the family. Experienced palliative care nurses provided expert care for the next 48 hours. Sunitha passed away very peacefully with her loving family by her bedside.
Someone who had palliative sedation
Simon was 78 years old with a long history of diabetes. He developed renal dysfunction five years ago and started on dialysis two years ago. Unfortunately, Simon’s overall health began to fail as he developed neuropathic pain in his lower extremities. He had significant difficulty with mobility and experienced a few falls. Simon had begun to spend most of his time in bed and felt he had a very poor quality of life. Every dialysis session left him exhausted. The nephrology team consulted a palliative care physician associated with the hospital. A careful and thorough exploration of Simon’s condition and his wishes confirmed that Simon did not wish to prolong his life anymore. The nephrology team and the palliative care physician had a ‘goals of care’ discussion with Simon and his partner. He was told that he could access MAID or that he could discontinue dialysis. Simon and his partner felt that a MAID death would be too sudden for them and preferred to be transferred to the palliative care unit to have a natural death. It was expected that he might pass away within 48-72 hours after discontinuing dialysis. By the second day, Simon had begun to have periods of confusion when he became fearful and agitated. He was barely able to take a sip or two of water while awake. Intermittent sedating medication was used to try to keep him comfortable. During a lucid moment and in the presence of his partner, Simon told the palliative care physician that he wished he could stay asleep. The option of palliative sedation was discussed with them. It was explained that sedating medication could be used to keep him in a deep sleep. He would no longer be able to eat and drink nor communicate with his partner. A natural death was expected to occur within the next week. Simon would receive mouth care and be turned appropriately to ensure comfort. All medications for comfort (including analgesics) would be continued. However, it was emphasized that he should be allowed to sleep undisturbed. Both Simon and his partner agreed that this is what they wished. Palliative sedation with a continuous subcutaneous infusion of Midazolam was started. Within two hours Simon slipped into a deep sleep. His partner stayed with him until Simon died three days later without regaining consciousness.
Someone who chose an assisted death
Mei Wen was a lively 85-year-old who lived alone with many family members and friends living nearby. She still drove her own car and would often act as chauffeur to some of her friends. She developed some persistent back pain which turned out to be metastatic lung cancer. She received chemotherapy and radiation which helped initially. However, after six months there was progression of the cancer, and her oncologist informed her that there was no further life-prolonging treatment available. They referred her to the palliative care team to help with advance planning and symptom management. Mei understood that her prognosis was about three to six months. She still wished to have treatable conditions treated though she did sign a do not resuscitate form and decided to opt out of ICU level of care. The palliative care team discussed some end-of-life options with Mei, including dying at home or in a hospice. This was a faith-based group and medical assistance in dying was not discussed. Although most of Mei’s symptoms were well controlled, she began to feel some fatigue and had to give up driving. She had family and friends eager to support her, but she became frustrated with her growing dependence on others. She was speaking of this loss of independence to the daughter of one of her friends who asked her if she had ever heard of MAID. Mei was very surprised to learn that assisted death was legal in Canada. The next time she met with the palliative care team she asked them about MAID. The social worker gave her the information needed to contact the assisted dying program in her community. Mei completed the process and was found eligible. When she informed her large circle of family and friends that she had set a date for her assisted death they were initially very upset as she was still mobile and did not seem to be “suffering”. Mei asked her MAID provider if they would be willing to speak to some of her closest family and friends. A family meeting was organized with Mei and six other family and friends. Through the hour-long discussion, the MAID provider was able to explain that suffering can mean different things to different people and while some people may wait until they are in intractable pain or are bed bound before they have MAID, others may wish to die when they still retain their independence. Mei had a party the day before she died where she invited all the people who were close to her. The next day she had an assisted death at home with her closest friend by her side.
Someone who is spiritual
Jacques was a 40-year-old musician who had had a Catholic upbringing. He had studied at a Jesuit seminary and had contemplated becoming a priest. In his early 20s he had become disillusioned with the Catholic Church and had broken his ties with organized religion. However, he continued to feel a deep and close connection to a higher being which he expressed through his music. One month ago, he was given a diagnosis of a rare retroperitoneal sarcoma. The tumour was inoperable and there were no curative treatments available. Further treatment would consist of trying to manage the very significant symptom burden which included pain and severe fatigue. Jacques was closely followed by his community palliative care team and his family doctor. Despite the best possible care, Jacques began to have significant pain and marked fatigue. He was aware of the option of MAID and decided to start the process. He was found eligible and made it clear to the assessors that this was a back pocket option – a last resort. Jacques had a very close relationship with his family doctor (who had acted as one of the MAID assessors) and during a house call he wondered how much longer he had. He was told that while it was difficult to predict, he could live for another month. Jacques broke down and said that he could not possibly endure the pain for another month. The family doctor explained some of his options and gently asked whether he wished to have MAID; Jacques disclosed that he felt very conflicted because of his Catholic upbringing which did not condone MAID. The family doctor asked the community palliative care team to arrange for a visit from a spiritual counsellor. During this visit, Jacques was able to explore his spiritual connection with his loving God. He felt a deep sense of peace as he came to believe that a MAID death would not alienate him from God. He chose his favourite hymns to be played and the counsellor attended the provision and prayed with him as he slipped away.