Hospice demonstrates the importance of good palliative care

    1 of 1 2 of 1

      This has not been a good day for Yasmin Teja. She’s feeling weak from the cancer that has riddled her lymph nodes, her brain, and her breast. But as she lies close to death in her private room at the North Shore Hospice, Teja wants to get a message out about the importance of good palliative care.

      “This is a very well-run facility,” she says in a near whisper to the Georgia Straight. “They run a tight ship. People that are in our situation, we need something like this.”

      Teja adds that she doesn’t want to run down the treatment she received in hospital, but she emphasizes that the care she receives in the hospice is “above and beyond” what was available in the wards. She should know, having spent 50 days in hospital after her brain surgery. “The rooms are all private, and they have it decorated,” Teja continues. “It’s a pleasanter surrounding. The nursing staff is very good, the care aides excellent. And then the volunteers, they are tremendous.”

      She acknowledges that the nursing staff are occasionally a little late with medication, but says that’s only because of staffing levels. “If an emergency comes, they have to deal with that and they don’t have enough time to deal with less urgent patients,” she notes.

      Teja, who formerly worked at the U.S. consulate, is one of 10 terminally ill patients in the North Shore Hospice, which opened in November. A few minutes after Teja offers her thoughts, her sister-in-law, Khanum Schmitz, tells the Straight that Teja’s husband died from cancer about a year ago. “She has no parents, no siblings, no children,” Schmitz, a former UN official who lives in Texas, says. “I am the sole caregiver.”

      Fortunately, the hospice lets family members sleep on the premises so they can spend more time with their loved ones. Schmitz offers effusive praise for the medical care, saying the doctors are the best she has ever seen. She notes that the nursing care is focused entirely on the patient’s comfort, which differs from what takes place in an acute-care setting, and the care aides have a high regard for patients’ personal hygiene. It’s no wonder she says that if she had a terminal illness, this is where she would like to be.

      “This is more like a five-star resort,” Schmitz quips. “It’s a very nice place. No matter how sick people are, there is a smile on everybody’s face. When you are at that stage, that is important.”

      Dr. Peter Edmunds, medical director of palliative care on the North Shore, steps out from behind the front desk to discuss a major transformation taking place in this area of the health-care system in North Vancouver and West Vancouver. In an interview with the Straight in a brightly lit meeting room at the hospice, Edmunds explains that there is a widespread misconception that “palliative care equals death.”

      “Palliative care means quality of life—focusing all care on the quality of life, no matter how much time you have left,” he says. “That can be a very, very rich time for patients and their families. We can make a huge difference to the way people spend their time and the way they get to write the story of their death. If you allow time for reflection and for life closure and you make a comfortable place for them to address that stuff, you can really enrich their lives. It’s really a time of growth in the face of death rather than a time of doing nothing and waiting for death to come.”

      Other misconceptions? He insists that palliative care has nothing to do with treatment options. In other words, just because you’re a palliative patient doesn’t mean you won’t get the same type of treatment as anyone else with a similar health condition. He also says palliative care is not about where you are—and you don’t have to be in a hospice or a palliative-care ward in a hospital to receive this level of care.

      Edmunds and four other general practitioners have formed a group that specializes in this area on the North Shore. He says that each of them works with 60 patients who die each year, compared with the average of four deaths per year for most family physicians. He notes that palliative care used to mean providing care for people facing end-of-life needs. However, Edmunds says it is now much more proactive, with doctors trying to create proper support systems for those who are probably in the last year of their life.

      “That doesn’t mean you’re going to come to them and say, ”˜You’re palliative. You’re going to be dead in a year,’ ” he says. “All you’re going to do is”¦say, ”˜You’re probably going to need more support because you have this serious illness.’ ”

      This can take the form of arranging for the care of a general practitioner close to the patient’s home or letting family members know that they might have to set aside more time in the next year to deal with their loved one’s health needs. Terminally ill cancer patients are obvious candidates for palliative care. But Edmunds says that people with congestive heart failure or dementia can also enter this treatment stream.

      “For instance, if you have congestive heart failure and you have two hospital admissions for exacerbations of heart failure in a year, your chance of being dead in the next year is 70 percent,” he states. “If you have advanced dementia and you have a PPS—a palliative performance scale—of 50 percent, that means you’re spending most of your time in bed. If you need assistance with the tasks of daily living [and] you’re unable to do any meaningful work, your chance of being dead in a year is 90 percent.”

      On the North Shore and Bowen Island, there are approximately 1,300 deaths per year. Of those, Edmunds estimates that about 35 are by suicide or accident, and another 120 are unpredictable. This year, approximately 520 people are in the palliative-care program, he adds. He’s hoping to get that number up to 800 within a couple of years.

      In an interview in her office across from St. Paul’s Hospital, Dr. Romayne Gallagher says that a study last year in the New England Journal of Medicine demonstrated the value of palliative care. It examined people with lung cancer that had spread. Those who had access to early palliative care lived 2.7 months longer than those who received standard care. In addition, fewer patients (16 percent versus 38 percent) in the group with early care had depressive symptoms.

      “They got the chemo and that, but they also got palliative care, which is treatment of mood, treatment of pain, and everything,” Gallagher, a clinical professor in the UBC division of palliative care, tells the Straight.

      She also says it’s a common misconception that taking morphine, a pain-relieving medication, will shorten the life of a palliative-care patient. Gallagher suggests that this is why some people believe that doctors sometimes give terminally ill patients overdoses to end their lives—a belief that she characterizes as “unbelievably distressing and exasperating”.

      “If you use these medications appropriately, they’re very, very safe and they don’t shorten life, especially for people with pain and shortness of breath,” she insists. “It’s much more dangerous when you’re taking them [opioids] recreationally, because you don’t have the same stress on the body that they’re relieving.”

      She also chafes over how the media focus so much attention on euthanasia, because even where physician-assisted suicide is legal, it’s a relatively rare event. In Oregon, for example, she points out that it only occurs in about one in 1,000 deaths. “Even when euthanasia is available, they’re not using that,” Gallagher says. “They’re saying, ”˜I want good end-of-life care.’ ”

      Meanwhile, back at the North Shore Hospice, superb end-of-life care is what environmental-mining consultant John Gadsby says his wife, Elspeth, is receiving. More than a year ago, she was diagnosed with a facial tumour.

      “They used radiation and chemotherapy,” Gadsby tells the Straight in one of the hospice’s television rooms. “She is still having a little bit of radiation to reduce swelling, but it can’t kill it. Surgery wouldn’t work.”

      He recalls how challenging it was after his wife’s cancer surfaced. They had to move from the Comox Valley to the Lower Mainland so Elspeth could get treated at the B.C. Cancer Agency. Gadsby says he had to do all the cooking, cleaning, and other chores, which left him exhausted. The reality hit home for him in the middle of October of 2010, when an oncologist said that there was no use continuing with chemotherapy.

      “That was the toughest part,” he admits. “I hadn’t recognized how stressed-out I had become taking care of her.”

      He says his wife used to be an articulate, talkative woman who loved to cook, but now her speech is almost gone and the cancer has nearly paralyzed the side of her face. “So all of her personal faculties that she was proud of are lost,” Gadsby says. “Yet her mind is still active. She thinks of this and then tears up and says, ”˜I think I’ve had enough.’ ”

      A saving grace has been the care she is receiving at the hospice, he adds. Gadsby is thrilled with the hospice’s “club-like setting”, which enables him to spend the nights on the premises. “One has a fear of palliative care,” he says. “I say, ”˜Hey, this isn’t a bad thing. I want to make a reservation for me.’ ”

      Teja, who is resting in her bed, feels a similar level of appreciation. She even wrote a poem in praise of the nursing staff, which she forwarded to Premier Gordon Campbell to encourage him to promote better end-of-life treatment. It reads:

      When at LG [Lions Gate] Cancer I fought
      And had to walk be taught
      I vowed to champion their cause
      And take it to the seat of the Boss
      They ask for so little
      And they give so much
      They are our Province’s Treasure
      and that is only a fair Measure
      Premier, let’s expend from our coffers gold
      To assist them take care of our young and old
      Premier, if you can take this plea to the table and sell
      You will have served your citizenry and Province well.

      Comments

      2 Comments

      Bo Olson

      Feb 19, 2011 at 8:20am

      I ´m proud to say my daughter works there.

      0 0Rating: 0

      RNcompanion

      Feb 19, 2011 at 2:56pm

      People with dementia, although it is a terminal disease, do not end up in hospices or palliative care - they end their lives in long term care facilities, often special care units.

      The PPS tool is not used in residential care for a number of reasons - the main one being that the criteria in the PPS does not accurately relay the status of the resident in a long term care facility. It is a tool designed to identify the effect of active disease (primarily cancer) on the functionality of the patient to predict the eventual outcome. With some variation, that path is fairly predicable.

      Aging, combined with dementia/heart disease/stroke/parkinsons/diabetes/renalk failure/liver failure/chronic respiratory diseases (all conditions seen in residential care), is simply not that predicable.

      For example, I have cared for many residents with advanced dementia who remain ambulatory, but are in need of total care in all other areas of function. They wander, they walk around, they get into things but do not know or remember how to feed themselves, or to even recognize food, are unable to bath or dress themselves, and yet continue to live for sometime at this level - a PPS score simply does not apply. It is difficult to determine when they will sucumb to the extensive loss of brain function.

      People with dementia, heart failure, stroke etc do not access palliative care services unless their symptoms are so severe that nursing/medicine in residential care can not manage them. (a rare occurance). These people live out their lives in long term care facilities. The care teams in these facilities use palliative care services on a consultative basis as needed. The gerontological teams caring for these elders in facilities - nurses, geriatricians, OT/PT/Dietitians etc are very skilled not only in the complexities of aging, but in the delivery of palliative care as well.

      Hey Charlie, how about an article about gerontological teams??

      0 0Rating: 0