Over the past few weeks, I have had it on my heart to chat to people about timing. On almost a daily basis I hear loved ones of our patients ask: “Why did we not come sooner?” I feel more and more strongly that it’s time to educate people about palliative care. We could save people such trauma and so much pain (physically and emotionally) if they would come to us for palliative care at the right time, but most people facing decisions about end-of-life or palliative care are in uncharted territory and have no idea what to do in these incredibly difficult situations. I thought we could look at a few common questions… questions people usually don’t ask because they are afraid and don’t want to face them, but hopefully I can provide some answers, because the questions are critical and must be addressed.




So here goes:


Is there a difference between hospice care and palliative care?

Yes there is. The area is quite grey and as with everything that is about people, there are a lot of overlaps and blurred areas. In a nutshell, both types of care aim to improve the quality of life for patients with serious illnesses. The key differences are:


Hospice Care is typically provided when curative treatments are no longer part of the treatment plan. This can be because they are not effective or because the patient has decided not to continue treatment. With hospice care, the patient is considered to be in the last six months of life if the disease follows its normal course. The care focuses on providing comfort and quality of life for patients with terminal illnesses, often prioritising pain management and symptom control over curative treatments.


Palliative Care on the other hand, can be provided at any stage of a serious illness, including alongside curative treatments, and does not require patients to have a terminal prognosis. Very often, palliative care morphs into hospice care, but there is no big alarm when this happens as the principals of both types of care are the same.



Palliative Care also aims to improve quality of life by managing symptoms, relieving pain, addressing emotional and spiritual needs, and supporting decision-making, regardless of the patient’s prognosis. Here we also take our lead from the advance directive from the patient, so there is no one set of rules for everybody. This type of care is totally patient focused.


Both hospice care and palliative care involve interdisciplinary teams of healthcare professionals, but the focus and intensity of care always varies based on the patient’s needs and goals. Care escalates towards the end, where there is a great deal of focus on the patient’s loved ones and their needs around the approaching death. This is where established relationships make communication and grieving easier as the team knows and understands the family’s needs.


Overall, the primary difference between hospice and palliative care lies in the timing, treatment goals, and prognosis requirements, with hospice care specifically designed for patients nearing the end of life, while palliative care can be provided at any stage of a serious illness and right to the very end.



What services does hospice  and palliative care provide, and how are they delivered?

These cares are either delivered at home by an interdisciplinary team or in an IPU (in-patient unit) depending on the needs of the patients and the loved ones. Sadly, in SA this is very much determined by socio-economic influences.


How long can someone receive hospice and palliative care, and what factors determine the length of care?


As you can imagine, there is no easy answer. This depends on the patient and his or her circumstances. You can receive hospice or palliative care for hours, days, months or even years. We’ve had people stay with us for end-of-life care who got better and went home. Others had six weeks to live according to their prognosis and died within six days. Different medical aids pay for different amounts of time at an in-patient unit (usually ten to fourteen days in your lifetime) and they have different options for home care.


What happens if I am still alive and in an IPU and medical aid runs out?


The team will usually apply for an extension with the medical aid if the patient does not pass away within two weeks. It makes more financial sense for the medical aids to keep patients in IPU’s which are much more cost-effective than hospitals.


Does hospice care only focus on physical needs, or does it also address emotional and spiritual aspects?


I believe, more than any other medical care, palliative and hospice care focuses on spiritual and emotional needs. On all interdisciplinary teams you will find a social worker and we have close bonds with the clergy. This is an emotionally expensive journey for all involved: the patient, loved ones, carers and rest of the team. It is a beautiful space where the desperate urgency to find a cure has made way for a gentler path, giving time for everyone to reassess and rekindle love, fellowship and heaps of grace.


Can hospice care be provided at home, or does it require admission to a hospice facility?


Hospice care can be provided at home. Often the medical team would recommend an IPU admission in order to get symptoms or pain under control after which the patient can return home, depending on their needs and the physical and emotional capacity of their loved ones to care for them.


How are medications managed in hospice care, and who is responsible for coordinating prescriptions.


Your palliative doctor will work closely with a nursing sister and a group of carers to co-ordinate medication. Often towards the end of a person’s journey, the need for different dosages and different medicines, as well as the use of oxygen machines or specified wound dressings are needed, and all these needs to be carefully monitored and change continuously. A palliative team can only function well when all members of the team communicate well and frequently.


What happens if a patient’s condition improves while receiving hospice care?


This does happen, and then we all reconvene and together with the patient and loved ones, create a new plan of action. Everyone in the palliative field is acutely aware that nothing is carved in stone and that all journeys are as individual as the people that live them. On our website we say: “We meet you where you are” … and we really do, every day.


How does hospice and palliative care support family members and caregivers of the patient?


Palliative teams are trained and have a wealth of knowledge around what loved ones and the patient go through. There are conversations that are encouraged, and we share information on what to expect, assist with difficult decision making and advise on how to deal with guilt and feelings of hopelessness. When the people going through this ordeal feel well supported by a team they have come to know and trust, it eases the process. They feel empowered as truth is shared and everyone shares the same goal of ensuring the last weeks or months of the patient’s life is dignified, pain free and comfortable. Our entire team, from the doctors, myself, the social worker , carers and nursing sister, all go for regular sessions with counsellors and social workers to debrief and to ensure that we never lose our passion or compassion.


Why are there so few hospices?


Hospices often rely solely on donor funding to stay operational. This is why Dr Jodi’s sustainable financing model, where funds from insured patients are used to cross subsidise uninsured patients, is brilliant. This ensures access for all people across the socio-economic divide and removes the burden from the poor hospice management to continually raise funds and to always be at risk of having to close. . Unfortunately, there are many hospices that are run-down and therefore, many people refuse to even look at other options because they assume that all palliative places will look like a scene from One flew over the Cuckoo’s nest.


Why is palliative care so different to acute care?


The goals are different. Instead of aiming for a success rate and longevity, which is the standard in typical medical environments, hospice and palliative teams aim for quality, rather than quantity of life. In acute hospital care, medical professionals usually make treatment decisions based on clinical guidelines alone. With palliative and hospice care, the decisions and management are holistic and more inclusive. Acute care is also prone to continuous investigations and interventions, but with palliative care the approach is much gentler and a desire for answers pales in comparison to the desire for dignity and tenderness. To watch Dr Jesne speak gently to her patients and explain how non-invasive treatment can be, is simply a thing of beauty. The relief patients experience once they come in to this space is tangible.


What is the advantage of hospice/palliative care at home?


Some patients wish to pass away at home. It is comforting to be surrounded by what is familiar and it is often more cost effective for those who do not have the means to go to an inpatient facility. Sometimes, the patient wants his or her family to do the caring personally. Family members often feel guilty and think that as this is the last thing they can do for their loved one and that they should care for them at home. Many people are also scared of going to a hospice or palliative in-patient unit as they think they are similar to clinical institutions filled with bright lights and beeping noises.


What is the advantages of hospice/palliative care at a reputable in-patient facility?


Please note that here I can only speak about Sunninghill Recovery Lodge and Zazen. I cannot speak to other IPUs where we are not involved.


With us, the family and patient are equally supported and there is 24/7 care which decreases the anxiety of both the loved ones and patients. You are in the hands of an experienced group of professionals, but still have the luxury of being surrounded by beauty and tranquillity and resting in the knowledge that everyone is there to support you and carry you through this ordeal. Family do not get overwhelmed to the same extent as they do not have to juggle all the caring responsibilities and carry the emotional burden of their  approaching loss.


We had a beautiful death of a dear Welsh gentleman recently. He had an enormous family and a big group of friends. His sister flew in from Cardiff on the day he died, and at one stage I was in the room alone with her and his body. They were both in their late 80’s. She told me that he was her baby brother and she practically raised him after their mother died when they were little. She said he bought her a Royal Doulton tea set for her wedding 60 years ago, even though he had no money. The night before he passed away, his son from Wales stayed in the double bed next to his hospital bed and they both had a lovely view of the pool, garden and bird feeder. As I left his sister, I looked out on to the garden and about twelve people were sitting next to the pool, having a glass of wine and toasted sandwiches. Rochelle, the social worker was chatting to them and there was lots of laughing and lots of crying. Two of the family members were sitting with their feet in the water. It was such a wonderful kodak moment of vulnerable connection that I know for sure, no other IPU in South Africa offers. It made me well up with tears and joy.


If I feel it is too hard to care for my loved one at home, won’t he or she feel rejected?


We have lived through this so often, and this guilty feeling is incredibly normal and natural and only affirms that you love your person. Bringing them to an inpatient facility is often the right choice, for you and for them. You will all be so much more relaxed than in a hospital environment or at home. We often want to avoid admitting that it is time for the person to be moved into a space where others have to step in, but this is not a failure. This is a brave and courageous move you make in order to give your loved one the best possible chance for a beautiful death. The patient will sometimes unknowingly manipulate you and say things like “You are trying to get rid of me” and “You can’t wait for me to die,” but once they arrive with us they quickly change their tune. I lived through this with my own mom. We all knew it would be much easier and more dignified if my dad came to us, but she felt that she was letting him down and he felt that she did not love him anymore. These are feelings that just confirm that we are human and think with our hearts. Once my dad was here, he settled in so beautifully and became so loved, and my mom was able to come and go and stay over and take him out without the physical and emotional stress of being the main carer. (We see often that even though people are given carers in the home environment, the spouse or children still do the caring as it is in their own environment and it is hard to delegate things to hired carers).


What if my person is in an inpatient unit and I am not there when they die?


I am sure none of us want to admit to the mysteries of life, but people die when the time is right. We’ve seen people die minutes after they were forgiven. A lady waited for her Maltese poodle to come and visit before she died. Others waited for loved ones to either leave or arrive, and one particularly considerate woman waited for the day before her daughter had to emigrate. Many patients die while they are with a favourite carer, or when the right people arrive. It is funny how it always make sense when the patient dies. It happens like it should. While we cannot control this, we can assure you that when they are with us, your person is always loved and never isolated or alone.


How do I know what the right decision is for my loved one?


Discuss these difficult issues now, while you are healthy. Have an advance directive in place and a DNR. Tell your family what you want and let them share with you what they want and fear. We see so often that people only arrive here after a fall or a terrible night of uncontrolled pain, and by then everyone is so exhausted and on edge that instead of a gentle journey to the end, people are fighting, emotional, aggressive and exhausted. Don’t wait to discuss these awful things because one oncologist gave you hope that there is a 5% chance of survival. We see so often that people vainly cling to that hope and don’t discuss the other 95% probability.  Last minute decisions or choices made when people are desperate, are often not the right ones.