A PCU patient

Last month I interviewed Drs. Donna Spaner and Kate Whitehead two palliative care physicians at The Salvation Army Toronto Grace Health Centre (TGHC). Both physicians shared their thoughts and views about the services that are provided on the TGHC’s palliative care unit and in the community.

Drs. Spaner and Whitehead believe that good patient care begins with respecting the patient’s wishes for where they choose to die. They agree that most people prefer to die at home or in familiar surroundings. However, the reality is that over 70 per cent of people die in an acute care hospital and are prevented from dying at home because of what Dr. Spaner calls barriers.

What kind of barriers Dr. Spaner prevents people from dying at home?

“One of the biggest barriers is not having a full-time caregiver 24-hours a day. Some people might not have a caregiver they can rely on, or relying exclusively on one caregiver can cause other problems, namely caregiver fatigue or burn out.”

You said barriers, plural, what other barriers Dr. Spaner make it hard to die at home?

“Well for one, lack of financial resources, and two the lack of palliative care services in the community. There is home care support in the community but not 24-hour support, unless you have the financial resources to pay for it. When we talk to patient’s caregivers they often tell us that they’re really tired and can’t keep up the 24-hour care for their loved one. For this reason it’s important to have layers of palliative care services in the community, respite or in a palliative care hospital setting. A service like TGHC’s palliative care program is beneficial because we have 24-hour palliative nursing care. We admit patients from the community who need this service. We also admit patients that are more medically complex, for example heavily debilitated, and require a lot of nursing care.”

Dr. Whitehead what are your thoughts on end-of-life care at home?

“People who require end-of-life care need to be in whatever environment they feel most comfortable in. There should always be an option for an environment that’s not home. People also need to be able to reserve the right to change their mind when they are in the thick of it…end-of-life. You can have a very detailed care plan, but until you’re living with and experiencing a progressive illness you don’t really know what your decision is going to be…home death, hospice or a palliative care unit. It’s important to support the people who do want to die at home, and also have a real-time option to decide when it’s not working for them at home. We provide access to an in-patient palliative care unit 24/7 both for people who choose a palliative care unit in the first place and those who decide later.”

Then what are respite services Dr. Whitehead?

“Respite care is when we provide end-of-life care for a patient who comes from the community for a short time allowing families and caregivers time to restore their energy and ability because of burn out. At the Grace we provide emergency, and planned short-term and time limited breaks for families and caregivers. It can be up to a two week break, or longer if necessary, and then the patient returns home.”

Dr. Spaner what happens first when I come to the palliative care unit at the TGHC?

“You and your family are met by a team of health care professionals. When patients arrive on our palliative care unit we determine their care goals with the patient and their family. Their goals are their wishes for care, the type of care they want to receive – goals are different for each individual.”

What is a team approach Dr. Spaner?

“When a patient arrives at the TGHC they meet with members of an interprofessional health team – a palliative care physician, a palliative care nurse and a social worker to help determine their goals. Other allied health professionals are available as required – a chaplain, pharmacist, physiotherapist, psychiatrist, recreation therapist, registered dietitian and/or a speech language pathologist. Each team member brings their own set of skills collaborating with other team members, the patient and family. At home for example you’re not going to have a doctor, social worker or nurse all visiting at once. You can get a lot accomplished when you have the whole team onsite working with the patient and family.”

Dr. Whitehead what are some of the benefits to end-of-life care in a palliative care unit?

“The presence of an interprofessional health team collaborating onsite allows us to change things a lot quicker for a patient. We can change the care plan every hour if needed. We can monitor a pain crisis, or manage a difficult symptom. The palliative care team can often have more confidence in their clinical approach and be more aggressive in pain management or other symptom control. Another huge benefit is our palliative care nurses who work 24/7 exclusively on the palliative care unit. Their experience is invaluable and their expertise is amazing. If I write an order I know the nurses will use their expert judgment in implementing the care plan. They’re familiar with the drugs, doses, and the common complications, as well, they’re familiar with the patient and what he/she requires because the nurses are familiar with the process.”

But as a palliative care doctor working in the community Dr. Whitehead wouldn’t you need to have a similar working relationship with the caregiver in the home?

“I feel a lot safer giving an order to our nursing staff who are experts in palliative care then I would with someone who is a caregiver in the home. The fact is that caring for patients at the end-of-life is a full-time job for our nurses. They have the experience to know when things are working and when they are not. They know what to expect, and I know that they know how to react. Family members and patients at home have different abilities so sometimes home care has to be more conservative to make sure that everybody is safe. I also don’t have the capacity to go into a home every hour to see what the patient’s response was to a medication change. On a palliative care unit you have an interprofessional health team on site who can evaluate you in real time and who can change your drug doses in a way that responds to change. This can be done in the home environment when people are stable enough, and if you have the means and resources to be taken care of at home; then it can be accomplished.”

Dr. Spaner what is the Palliative care criteria for admittance at the TGHC?

“We admit patients who are in the last three months of their life.”

Are we that good at determining the time a patient has left?

It is difficult to determine whether a patient has two months, four months, six months or eight months to live, but usually we can determine if the patient may die in the next few hours to days to weeks. We have tools that we use to help us determine this.

Dr. Spaner could the quality of care the patient receives in a palliative care unit contribute to a patient living longer?

“Literature on palliative care patients indicates that patients who receive early palliative care actually do better; they can live longer. Patients who come to the palliative care unit often do better than we think they were going to do. Sometimes, patients who come to the unit for many reasons weren’t receiving a lot of care in the home environment, such as they live on their own and haven’t sought out community services. When they’re given attentive nursing care the patient tends to do well.”

Dr. Whitehead from your perspective what would be a key difference between providing end-of-life care at home versus a palliative care unit?

“When people are dying at home an aspect they might not consider or appreciate is that the caregivers are emotionally involved, as well as being responsible for their loved ones physical care. Sometimes they don’t get to be emotional caregivers to their full capacity. This is because the caregivers spend a lot of time with physical activities and tasks like laundry, grocery shopping, cleaning, pharmacy pick-up – all duties to make the palliative patient more comfortable. So the question becomes what is the unique role of the family member? What are things a family member can do and how can we enable them to do those things. From time to time what works best is for family to have the space to be there emotionally, to talk or listen. On a palliative care unit family members can be better able to provide emotional support because they are not task driven. Our palliative care team is incredibly skilled at supporting patients emotionally or preparing them for what is happening. But no one can replace your sister or your mom when your needs are emotional.”

Is there anything you would like to add Dr. Whitehead before we end our discussion?

“We care for people who are at end-of-life all day everyday and our palliative care unit is very committed to providing a compassionate and caring environment. Sometimes when a patient is facing something that is incredibly difficult and in a lot of cases new, the patient benefits from being in a palliative care unit where the doctors, nurses and the interprofessional health team can anticipate their needs at a time where they are vulnerable.”

Dr. Spaner?

Palliative care philosophically is not based on shortening life or extending life – it’s improving the quality of life you have…moment to moment.”

By Gerry Condotta