The Community Palliative Care Network practice was sustainable and grew over fourteen years. When I dissolved the practice in 2010, I reviewed my approach to the care of the patients referred to me in order to compile successful strategies. In Chapters 8 to 16 I will describe these strategies using examples inspired by true patient journeys at near-end-of-life. I will start with my approach to communication.
Communication
Home visit:
The ‘home visit’ was now my primary method of delivering care to my patients. It contrasted with my experience at the Ottawa Regional Palliative Care Unit where I spent all day walking down two corridors of a hospital unit with the patient rooms on either side. In the community, driving from home to home grounded me more firmly into the reality of life. It gave me a new perspective, demonstrating to me what was most important for my patients – to live their lives in their own unique way.
The setup of this practice using home visits presented me with a very new experience. My previous home visits had been with patients I knew well, having developed relationships through many office visits. In my community referral practice, all the patients were new to me. Before fax machines, I needed to visit the referring hospital’s record room to review and summarize their histories, treatments, and latest prognoses. The patients were nervous. They were meeting with and being asked to trust a new physician at such a difficult time in their lives.
Adapted WHO approach to communication:
In my approach to communication with my new patients and families, I decided to use a variation of the World Health Organization’s approach to offering help in a new village, learned during my time in Malawi. I realized each home was like ‘a small village’, filled with close family, at times with extended family and close friends. When I entered a house, I was in their world. If I were to gain their trust, I would need to adapt to each patient and family in their present situation.
The ideal approach, featured in Chapter 3, is repeated on the next page.
| Step 1: |
Understand yourself. Know your values. Know your ideal goals for family medical care. Know the realistic constraints with medical care in the home and your community and know your boundaries. |
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| Step 2: |
Assess the new family, present situation by listening, observing quietly. |
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| Step 3: |
Make four lists using the headings:
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Keep these lists in your mind only. Do not speak yet. LEARN from both lists 1 and 2. Lists 3 and 4 may be different. Do NOT act yet! |
| Step 4: |
Start to build TRUST. Quietly, compare your list of deficiencies with the families’ list of needs. Identify a need in common - a high priority for the family, the potential for a positive solution with your help. Work together to resolve this problem. Teach and listen through the process. |
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| Step 5: |
Identify a severe need not understood by the family that is a high priority for you and has a good potential for a positive solution. Explain your concern. Ask if you can work together to try and solve that problem. |
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| Step 6: |
Empower the family. Address as many of their perceived needs as possible. Continue to work together and educate each other. |
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I learned over time that the realistic approach is often very different from the ideal. Trust, built over time, is essential, but trust is very fragile. The ‘art’ of palliative care is to find a way with each patient and family to build a relationship and trust. Acting too quickly and failing destroys trust quickly. In the home environment, the recovery of that trust is almost impossible to achieve. Families and patients simply refuse ongoing visits. The reality is that enduring trust requires quiet, deep listening and patience.
Some of the ideal concepts were made very clear to me early in my practice. Indeed, when I was in the homes of my patients and families, I instantly knew I was in their world.
I had to follow their household procedures: simple ones like where to put my coat and shoes; or more complicated ones like what time of the day to visit so as not to interfere with the family routine or to have certain family members available during the visit.
The ideal approach to communication was not as easy as I expected. In the first few months, often when I introduced myself at the door, family members would take me outside for a private conversation without the patient. They would warn me that their mother, father, spouse, etc., did not know they were dying or did not want to talk about dying. The family felt that talking about death would make them sad. So, they ordered me NOT to speak about the subject. If I did, they would not let me return.
If I went against their wishes, I would be prevented from participating in the ongoing care. But I also knew that to provide excellent and safe care in the home for my patient when a crisis occurred, the patient and family needed to be realistic about the goals of care and what type of interventions were possible in the home setting.
I knew I needed to set my boundaries before the major crises occurred. So, I carefully responded to this type of request of not speaking about the patient’s imminent death by saying, “Yes, I will respect your wishes – I will not bring up the subject. But if your loved one asks me about death and dying, I will answer what they wish to know, even if that means we talk about death. If there has been no discussion about death before I am faced with the need to assess a serious life-threatening complication, I will do the initial assessment. Still, you need to know I will likely advise you to call 911 for transfer to the hospital. It is just too dangerous to treat a serious complication at home when the patient is very fragile, and the patient’s goal is still unclear about further active treatment. There needs to be a definitive assessment in a hospital setting where complications from the illness and treatments can be addressed quickly and safely.”
This process was not about the science of the dying process but the ‘art’ of building a relationship with the patient and family to prove to them that I would be a link for them, easily accessed if they had problems. Together we would take moments of quiet reflection to listen to each other. I would reassure the family that their concerns had been heard and explain to the family the process of what they were observing. The reality was that most of the patients did know they were dying. Often, they were afraid talking about their death would worry their family and make them sad. My best hope in these situations was that my patient would initially have minor and straightforward symptoms that I could easily control. By resolving each minor crisis, I could slowly gain their trust. Once they trusted me, they would be the ones who initiated the conversation about the dying process.
Once we all understood what we were about to face, we became partners in the journey, each feeling free to voice observations and concerns. Frustration, for me, occurred when patients deteriorated quickly, with sudden severe crises. Poor communication or panic reactions by family members in the situation led to trips to the Emergency Room with admission to the hospital.
Unfortunately, trips to the emergency department were seldom good experiences for the patients. After the attending physicians reviewed their medical histories and understood there was no chance of helpful active treatment, patients were treated ‘differently’. The patients were often sent home frustrated and with only minor improvement in their symptoms. So, the patients and families would soon decide for themselves never to go back to the hospital. They began to understand their reality with the progression of their illness. They initiated the conversation about the progression of their disease and the best care for them to stay at home. However, I continued to strive to have those near-end-of-life conversations before a severe crisis to help prevent the unnecessary and frustrating trips to the emergency room.
