Current visitor restrictions to hospitals as a result of COVID-19 are critical to protect vulnerable patients and hospital staff.
However, reduced visiting hours and limiting visitors are causing distress and anxiety for people affected by cancer during an already difficult time – especially for those in palliative care.
“Visitor restrictions have put a great strain on our family and meant we couldn’t be there to visit dad together as a family.” - Mel, daughter of bowel cancer patient.
Practical tips for patients and carers
With limited face-to-face time with patients in hospital, people can feel disconnected, particularly where information is limited because the patient is unable to communicate or can’t access electronic devices.
There are, however, practical steps carers, friends and family can take to feel connected and informed about the treatment and care their loved one is receiving.
Top tips quick
- Nominate one caregiver that is the main contact point for the hospital.
- Get the best number to contact your treating team.
- Ask to be dialled into critical appointments such as test results, treatment planning and at discharge for medication instructions.
- Visitors need to follow visiting rules set by the hospital. These may vary as physical distancing still applies.
- Call ahead to check specific hospital visitor restrictions.
- Coordinate visits with others so you don't exceed permitted visitor numbers, particularly for patients in shared rooms and day cancer units.
- Make sure patients receive written discharge instructions when leaving hospital such as for medication dosage, wound care and pain management.
- For those in palliative care, ask if special considerations can be made.
- To escalate unresolved concerns ask for the patient advocate who can help with mediation.
- Call Cancer Council's nurses on 13 11 20 for information and support.
Download fact sheet
Additional tips and information
Nominate a main caregiver for hospital visits and information
Despite some easing of restrictions, it’s helpful if you nominate one person to be the key contact for the hospital and a central point of information if you have a team of carers.
Make sure this person can be reliably contacted - they always have a mobile phone on them, and the phone is taken off silent.
“It made sense that mum would be the main caregiver and so she visited dad in hospital, and we accepted this.” - Mel, daughter of bowel cancer patient.
Find out more about caring for someone with cancer
Get to know your treating team and their roles and responsibilities
Getting to know your treating team (also known as multidisciplinary team or MDT) is more difficult when communication is limited to phone and video, however it’s worth ensuring you can share past history, interactions with other specialists and any new health or treatment-related concerns as they arise.
While everyone has different specialists and not all hospitals have the same staffing arrangements (and some have different titles), identify the key healthcare professionals you should get to know.
They may include the oncologist, surgeon, radiologist, nurse (or care) coordinator, social worker, plus allied healthcare professionals such as physiotherapist, dietitian and psychologist.
A useful list of health professionals and a simple description of their roles can be found here.
Get a list of key hospital contacts (including after hours)
While most Australians today have mobile phones and so many patients can be reached directly, being able to speak with the patient will depend on the state of their health.
Therefore, ask your treating team for a list of key contacts at the hospital, the best number/s to call them on and find out the type of information they can help you with. For example, the nurse in charge has access to the patient on the ward for daily updates.
Also ask for the best number to call for any urgent issues that arise out of hours.
"Communication with dad’s treating team was really difficult. The surgeon let me know I could contact him at any time. Now I know this, I won’t hesitate to make contact with him or any of dad’s other doctors if needed.” - Mel, daughter of bowel cancer patient
Identify the best time to visit
Speak with your treating team or the nurse in charge about the best time of day to visit when the patient is available and most alert.
Alternatively, you may want to organise your visit when the treating team is doing rounds and visiting the patient. This can vary so it’s best to call ahead and speak with the nurse in charge as to when this is going to take place and may even involve waiting close to the hospital and asking that they call you when the doctor is close to make sure you don’t exceed time restrictions while waiting.
Follow hospital safety protocols
To keep patients and staff safe, visitors must comply with all screening and infection control measures put in place by the hospital as outlined by the Department of Health and Human Services:
- Visitors to any care facility across Victoria must wear a face covering
- Even with a face covering, you should keep at least 1.5 meters apart from others
- wash your hands after using lifts, holding railings and every time you enter and exit the patient’s room
- follow rules about visitor and time limits
- limit movement around the hospital as much as possible
- limit the number of personal items you bring into the hospital
- follow rules about wearing specific masks, gloves or gowns if requested by staff.
- Hospital staff will help you follow these conditions to help keep your family members or friends safe.
Other ways carers can protect patients and staff in hospitals – as well as yourself - is to make sure you are up to date with your vaccinations including flu, chicken pox and over 65 vaccines. Ask your doctor for advice.
Now is also a good time to stop smoking. Evidence suggests people who smoke are more likely to develop infection with COVID-19 and experience its symptoms. The combination of a reduced immune system and the impacts of smoking or vaping on the lungs, including inflammation and poor lung function, means people who smoke are quite likely to be at a higher risk of illness. For information and advice contact Quitline on 13 78 48.
Dial into specialist appointments via phone or video call (telehealth)
If you can’t be at the hospital for specialist appointments, day cancer units or when the treating team is visiting patients on their ‘rounds of the ward’, carers can ask to be contacted via telehealth.
Either the patient can ask to call or FaceTime using their mobile device or if the patient doesn’t have one, they’re in poor health or don’t know how, ask your treating team if they can assist. Some hospitals have devices and may have support staff or volunteers to help set up the connection.
Ask if this can be set up as a standing arrangement for all appointments and medical briefings or contact the nurse in charge in the morning to confirm this arrangement.
See our fact sheet for information about getting the most out of your telehealth appointment.
Also see ‘Making the most of a doctor’s appointment’ for tips including preparation beforehand and our question checklist.
Keep a diary or electronic record
“Dad had major surgery, he wasn’t eating, he was nauseous, he was tired and was trying to take in a lot of medical information he didn’t necessarily understand.” - Mel, daughter of bowel cancer patient.
Regardless of whether you’re the patient or the carer, medical information and instructions very quickly begin to ‘pile up’ and over time it’s very easy to lose track or become confused.
It’s useful to keep a record or diary of conversations, medications, side-effects and make a note of questions as you think of them that you can reference at your next appointment.
This is valuable during appointments with specialists where you expect to receive important information such as test results or detailed instructions such as at discharge.
Ask your treating team to write down important instructions to reference later or ask if you can record the discussion on your mobile phone or via video conferencing if using.
This is particularly helpful where English isn’t your first language, you have low literacy, a disability, or you’re sharing caring duties with others.
Most phones have a voice recording app pre-installed, like ‘Voice Memos’ on iPhones or ‘Voice Recorder’ on Android and video conferencing programs allow you to record sessions. Ask for permission before taking a recording.
There are also various health apps you can download to your smart phone that allow you to keep track of your health information.
- The Australian Government’s My Health Record allows you to access your health information and add your own information including an advance care plan. Visit the Australian Digital Health Agency website for information about the safe use of apps and for a list of apps that connect to My Health Record.
- CancerAid is an Australian app developed by cancer specialists that helps you keep track of your treatments, experiences and side effects.
- Thrivor provides patients with a better way to manage appointments, communications and payments.
Other support apps include:
- Gather My Crew is a free online rostering tool – that assists you to coordinate help with family and friends.
- CanDo app is affiliated with The Garvan Institute of Medical Research and is a free tool that lets family and friends what they can do to help.
Raise cultural or spiritual needs
Most hospitals have pastoral and spiritual care workers to care for the spiritual needs of patients, families and staff. These services support each person’s beliefs, traditions, values and practices during illness, surgery, hospitalisation and end of life. Ask the hospital about its Pastoral and Spiritual Care service and to arrange a visit from a pastoral practitioner.
Arrange an interpreter
The Chief Health Officer has advised that hospital visitors are permitted if you are providing interpreter or informal language support to enable the delivery of care by the care team.
The patient can only have one visitor at a time, and visits should align with the times interpreter or language support is required by the care team.
Set up an Advance Care Plan
As treatment options continue to improve, people are living longer with cancer. While once palliative care and advance care plans meant end-of-life, today people can be referred to these services much earlier if they’re living with cancer or if their cancer returns.
Everyone makes treatment decisions based on your values, beliefs, likes and dislikes. Advance care planning is a process of planning for future health care. While the name suggests it should be done at a later stage, it’s important people with cancer write your choices down and share them with your carer and loved ones to be referenced throughout your treatment.
This is now more important than ever. Consider what are acceptable and unacceptable health outcomes for you and who will make decisions on your behalf if you’re not able to. Some people may want to avoid hospitals, particular treatments or take a break from treatment altogether.
As a carer you need to be informed of your loved one’s preferences and be able to communicate them if they are not able to.
As a carer:
- start a conversation with your loved one – ask them about the medical treatment and outcomes they want or not want
- encourage them to identify or appoint a medical treatment decision maker – a person they can trust to make medical treatment decisions if they become suddenly unwell and are unable to do so
- encourage your loved one to speak to their GP or oncologist (consider a telehealth consultation) about advance care planning and their preferences
- encourage them to write down their preferences in an Advance Care Directive and provide a copy to their decision maker, their GP and their treating health service
Visit Advance Care Planning Australia’s website: www.advancecareplanning.org.au or call the free National Phone Advisory Service on: 1300 208 582 Monday to Friday 9AM – 5PM (AEST)
Find out if you qualify for special consideration
It is a truly difficult time where health professionals are making both ethically and morally challenging decisions that affect the lives of all Victorians. As much as possible, they are trying to apply rules that are fair and equitable.
There are times however, where individual circumstances are unique or particularly challenging and, in those cases, hospital administrators and treating teams will convene to discuss options.
Visit the Department of Health and Human Services website to see if you might qualify for special consideration and raise it with your treating team. Such circumstances relate to patients in palliative care, life-threatening conditions, mental health, and language barriers.
For free and confidential advice contact Cancer Council’s cancer nurses on 13 11 20.
Contact patient services to resolve issues
Where you’ve been unable to resolve an issue directly with the treating nurse, medical team or nurse unit manager, ask to speak to the manager of the area or contact patient liaison (also called consumer liaison or patient advocate) services.
You can also find this information on the hospital’s website under ‘feedback’ or ‘contact us’ or search for ‘complaint’.
Unresolved health complaints can be directed to the Victorian Health Services Commissioner. This is an independent statutory authority established to receive and resolve complaints about health service providers. This is a free and confidential service. Call 1300 582 113.
Make sure you get a written discharge and briefing
At discharge make sure the patient has been given a written plan with clear instructions for post hospital care including wound care products if needed. This should include follow up care, medications and dosage, instructions for pain management, symptoms to look out for and emergency contact details.
Your treating team should take the patient and ideally a carer through these instructions and give you the opportunity to ask any questions.
Ask about special consideration for people in palliative care
Hospital visitor restrictions are especially difficult for people and their loved ones in palliative care, and so special considerations may be applied.
The Department of Health and Human Service’s current visitor guidelines state:
- A patient who is dying and/or receiving end-of-life care can have one household per day for up to two hours. In addition to the one household visit, the patient can also have two people visit at any one time. There are no limits on the number or duration of visits. Special considerations may also be applied in discussion with the hospital.
For patients in palliative care the advice is to discuss with your hospital the duration and total number of visitors throughout the day.
Find out if community based or hospital in the home is an option
Hospital in the home (HITH) or community health services may be an option for patients to receive care or treatment from home, or other suitable location. Some of the services that can be provided at home are chemotherapy, wound care, antibiotics and palliative care.
There’s no additional charge for HITH patients. They’re regarded as hospital inpatients, care is coordinated by their treating team, and the patient has 24-hour contact with the hospital.
Victoria also has a network of state-funded community health services that deliver a range of primary health, human services and community-based support including helping patients recover at home after leaving hospital. Patients will generally receive a clinical nurse consultant as a key contact for at-home support. Referral to the program is arranged by your hospital when you are being discharged or through your GP. Ask your treating team if this is an option for you. For a list of local health services visit the Victorian Government’s Community Health Directory.
There is also home-based health support available through Commonwealth Government funded services for older people (aged 65 and over, and Aboriginal people aged 50 and over). An assessment for eligibility is needed. More information can be found at My Aged Care assessment services.
Ask about palliative care services in the home
Palliative care services are available in different settings depending on your situation. Many people want to die at home surrounded by their loved ones, and this is particularly relevant during COVID-19 hospital visitor restrictions.
The federal, state and territory governments fund core palliative care services so that they are free in the public health system, whether you receive care at home or in a public setting. However, sometimes you may need to contribute to the costs of care for things like specialist equipment and 24-hour nursing staff.
Everyone has the right to palliative care services in the home and hospitals and your treating team can refer you to community-based palliative care. These provide 24 -hour access to support including a number to call or regular visits from a palliative care nurse. Palliative care services provide a range of support from a multi-disciplinary team (MDT) including symptom and pain management and psychological counselling.
To find out what is available in your area, speak to your health care providers, contact your local palliative care organisation using the directory of services or call Cancer Council on 13 11 20.
Other information and support are available from:
Contact Cancer Council for support
Anyone affected by cancer - patients, carers, family, friends, workplaces or health professionals – can call us on 13 11 20 for free and confidential information and support. We also have an interpreter service on 13 14 50.
Many of our nurses are practicing oncology nurses who are available to discuss your COVID-19 concerns, answer any cancer-related questions, help you navigate the heath system, and connect you with more than 470 support services around Victoria.
Our cancer nurses can also refer eligible patients and carers to counselling support services to assist people who may not otherwise be able to access or afford specialist support.